This thesis explores home-based care volunteer (HBCV) identity and how it is shaped by context in rural KwaZulu-Natal, South Africa. The literature on home-based care in Africa is dominated by the "burden of care narrative" which is supported by the themes of "women as caregivers", "poverty" and "stigma". The literature presents government and stakeholder collaboration as the general solution to alleviating the burden of care on women caregivers. A wider scope for research within the themes is necessary to discover alternative solutions to the problem of the burden of care. This study ventured to expand the scope of current research by exploring the area of HIV and AIDS home-based care volunteer (HBCV) identity and participation in care and support. Fifteen HBCVs were interviewed about their work and personal life stories and interviewed reflexively using narrative interviewing. Findings indicate that the women's stories were dominated by narratives of gender, poverty and sociopolitical factors (social field narratives). Meta-narratives influencing the women's lives were stories of communal motherhood, aspirations to service-oriented work and religious beliefs and commitment. The women's personal life stories revealed that they saw themselves as distinctively caring. Connections between the different aspects of identity and context revealed that the women made sense of their community participation through their personal identities as strong and loving mothers and the association with the group identity of community mothering. Home-based-care volunteerism was explored as a form of agency in response to a lack of recognition, support and acknowledgement for AIDS caregivers and their patients. Researcher reflexivity through autoethnography and poetry contributed to achieving depth in the study and to the understanding that HBCVs strive for space recognition, acknowledgement and validation for their work. In a resource strained context a balance must be found between material compensation and respect and recognition which can be effective in sustaining community initiated volunteerism. / Thesis (Ph.D.)-University of KwaZulu-Natal, Durban, 2013.

In the context of recent shifts in South African national health policies that integrate mental health care into primary health care, the family rather than the institution has become the primary site of ongoing care for psychiatric clients. The purpose of this qualitative phenomenological study was to describe how caring is rendered at home for the mentally ill person by family caregivers, living in Northdale, Pietermaritzburg. Purposeful sampling was used to recruit six family caregiver participants from the psychiatric clinic waiting room. These were caregivers who had accompanied their family member with mental illness for treatment on that particular day. Data generated from in-depth interviews with these participants provided personal experiences of their caregiving practices, behaviours, and problems. Data analysis was based on descriptive phenomenology and Colaizzi’s method of data analysis and data representation. Significant statements were extracted and grouped to form larger units or clusters. The clusters were then organised into nine themes, with associated significant statements made by the caregivers: Theme 1: Family as support system. These aspects related to daily maintenance of nutrition, hygiene and grooming for the family member with mental illness. The participants indicated that the maintenance of these activities f daily living were very important in the care of the SMI individual at home. Theme 2: Commitment to care. Evident throughout the interviews were issues of how caregivers perceived and sustained the ongoing responsibilities of home care for the mentally ill. There was a willingness and complete commitment to caring for the SMI family member with all its responsibilities. Theme 3: Disruption to family life. Details emerged from the interviews about how families adjusted to the constant needs of care provision, supervision, and vigilance demanded by home care giving. The participants accepted that problem behaviours were part of caring. Theme 4: Value in contributing to care. The interviews revealed various aspects of how caregivers drew reassurance and a sense of positive accomplishment from successes in teaching, supervising and managing a mentally ill relative at home. There were positive aspects to caring in that the SMI individuals could be of help to the caregivers. Simple tasks such as empting of bins, shopping and dish washing were part of the daily routine which proved beneficial to the caregiver and the family member with mental illness. Theme 5: Maintaining hope. Various implications emerged in the study such as being hopeful, and having a positive outlook as caregiver, despite the behaviour problems and chronic nature of the client’s mental illness. Participants indicated that despite the fact that they have a responsibility to care they are hopeful that one day the family member would be as normal as any other person. Theme 6: Support and Guidance: Ongoing assistance. Several issues emerged in relation to the involvement of the community psychiatric clinic professional staff in giving support and guidance to the individual caregivers, such as provision of information about side effects of medication, especially drowsiness, impaired communication and inactivity, guidance on how to cope with taking of substances by the client, and assistance with preparing for lifelong care of the family member with mental illness. Theme 7: Concern for Continuity of care. There was the need to look at what would be the outcome if the parents were not there to care for the SMI individual. Even though this is something to think about and had been broached at one time with the psychiatrist the family and care giver are hopeful that another family member will step into the caring role should they not be there. Theme 8: Fears and difficulties experienced in caring. Problem behaviours and danger to self and others is always upper most in the minds of the care givers, this resulted in even limiting friends because the SMI individual could be influenced into taking drugs. Care giving involved taking steps to ensure the family member does not hurt himself or herself. Theme 9: Misuse of Social Grant. Financial burdens were experienced by the family of the mentally ill individual. Social grants were being used to maintain the whole family for food, lights and rent. Sometimes the caregivers are forced to hand over the social grant to the MHCU just to ensure that there will be no problems at home if they were refused. Money is used to purchase cigarettes and drugs. Fear that the grant would be stopped results in the family not willing to report the abuse to the clinic staff. Implications for psychiatric nursing practice that the study highlighted included need for intervention by the community psychiatric nurses in regard to side-effects of medication, management of problem behaviours, and education for caregivers concerning the illness and especially its progressive signs and symptoms. Further research might explore current supportive programmes available in the community to keep pace with societal changes, with particular focus on whether. caregivers are included in the visits to the clinic with the mentally ill family member and what attention is given to their needs and problems so that they feel appreciated and valued. / Thesis (M.N.)-University of KwaZulu-Natal, Durban, 2012.

Introduction: Due to limited research within KwaZulu-Natal there is a deficit in the knowledge base and understanding surrounding the dynamics of caring for a child diagnosed with Down syndrome. The study aims to inform health professionals who adopt a psychosocial approach, such as occupational therapist, in an effort to improve the therapy and handling of the caregivers and children. Methodology: A sequential explanatory mixed method approach with an interpretive phenomenological perspective was utilized. Sampling utilized non-probability methods from the Down syndrome Association (KwaZulu-Natal) database. An initial quantitative descriptive survey (n=57) guided the subsequent qualitative phase encompassing focus groups and interviews (n=18). Quantitative data was statistically analyzed using SPSS (version 21) and the transcribed quantitative data utilized thematic analysis with in vivo, emotions and descriptive coding. Results and Discussion: Experiences were primarily influenced by initial reactions of the participants; their level of knowledge of the syndrome and reactions to informing their family and community. Thereafter the positive and negative aspects of raising the child affected their perceptions. Conclusion: Many factors contributed to the participants‟ perceptions of raising a child with Down syndrome, namely: community and family attitudes; support structures available; positive factors such as personal growth as well as negative factors such as the erratic health of the child and difficulties with inter-personal relationships. However; an overall positive perception was reported by the participants, with an emphasis on advice to other caregivers based on lived experience. / Thesis (M.O.T.)-University of KwaZulu-Natal, Durban, 2013.

South Africa has one of the highest country HIV/AIDS statistics in the world. The large number of ill individuals has created an unprecedented care work crisis in the country. In the absence of an adequate state supported care work response, the task of caring for people living with HIV/AIDS has fallen on community members. Under-resourced communities often do not have the capacity to engage in such intensive care work, and this shift has resulted in deleterious emotional, physical and financial consequences. This study sought to create greater understanding of the support available and accessible to friends and family members who serve as informal carers of people living with HIV/AIDS. Methodologically, this is a qualitative study. Nine participants from KwaNgcolosi, a periurban area in KwaZulu Natal, were interviewed. A semi-structured interview schedule was directed to elicit participants’ perceptions of the support that is available and accessible to them. Data was thematically analysed. Perceptions of support were understood in the context of the elements of social capital, namely trust, reciprocity, norms and networks, as well as the sociological strata in which these elements function, the bonding, bridging and linking levels. Findings suggest that informal carers perceive low levels of support. Participants reported poor support from local community and extra-community members which include friends and family members, local political and traditional leadership and leadership at a governmental level. Low levels of social capital exist in the community evidenced by lack of reciprocity, norms that isolate the carer, mistrust, lack of control over resources, and weakened networks which inhibit the participants’ pool of human resources. Stigma, discrimination and conditions of extreme poverty were major impediments to the availability and accessibility of beneficial social capital and thus the social support inherent in it. On the converse, the home-based carer (HBC) emerged as the strongest source of assistance to informal carers. The support reportedly received by the HBC 6 include emotional, instrumental and informational assistance. However, these contributions were insufficient, evidenced by the testimony from all participants that they were still experiencing extreme hardships in their care work. The findings suggest that development, project and policy initiatives should focus on empowerment, greater involvement of all stakeholders ranging from individual community members to government policy makers, greater networking and participation and finally that there should be greater investment in the HBC and the informal carer in terms of resources and capacity building. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2011.

The term ‘autism’ was first used in 1906 to describe a condition in adults. The term was later used again in 1943 and 1944 by Leo Kanner and Hans Asperger respectively who used the term to describe symptoms found in children. Autism was a relatively unknown condition until the 1980s and 1990s when research on the condition began to increase. The increase in research and availability of information lead to a better understanding of autism and related disorders and there has since been an increase in the number of people diagnosed with 1 in 150 children being diagnosed with autism in South Africa. Autism manifests before 36 months of age with males being four times more susceptible to Autism Spectrum Disorders than females. Research available on autism and related conditions has focused largely on scientific studies in the attempt to discover a cause for the disorder and a cure for it. In recent years there has been an increase in parents writing about their experiences with their children who have autism, however very little literature is available on non-kin care-givers and their experiences in working with children with autism. This thesis provides a view into the world of the non-kin care-giver through research carried out at two school sites in the KwaZulu-Natal region. This research through participant observation and interviews aims to fill the gap in the literature regarding non-kin care-givers of children with autism. The study looks at why non-kin care-givers choose to work with children with autism, the stress and challenges associated with working with children with autism, the highlights and personal impacts of working with children with autism and why non-kin care-givers continue to work in this field. In addition this thesis looks at the experiences of parents of children with autism and as such aims to describe a symbolic journey that parents and non-kin care-givers embark on with autism. In order to understand this symbolic journey this thesis has used the theoretical framework of van Gennep’s (1960) Rites de Passage and Goffman’s (1969) Spoilt Identity and Stigma, analysing each stage of the participants involvement in relation to the concepts of separation, transition or liminality and finally incorporation. By using these theories to analyse the research findings this thesis argues for the formation of a group identity through shared experiences and understandings of autism and in this way for the creation of an Autism Community. / Thesis (M.Soc.Sc.)-University of KwaZulu-Natal, Durban, 2012.

Globally HIV and AIDS are considered to be a major health and developmental challenge facing humanity. The HIV infection of children is not only an area of great concern for families but for the future of humankind. Caring and nurturing of children generally is considered as a challenging responsibility. Caregivers of HIV infected children are faced with the added responsibility of ensuring that these children have access to life saving health care at all times. Caregivers who are responsible for the health and well being of HIV infected children face constant challenges in their care giving role and this has implications for the quality of care of the child. The needs of HIV infected children are complex and vital to their basic needs is the administration of antiretroviral therapy (ART). This study aimed to explore, describe and interpret the experiences of caregivers, caring for HIV infected children and accessing services from a public hospital in Durban. Using the ecosystems theory, this qualitative study explored the experiences of thirty caregivers caring for HIV infected children. The data was collected using semi structured interviews with the caregivers. Four main themes emerged from the data analysis; namely: The caregivers’ intrapersonal experiences, their perspectives on HIV and ART, their access to health and social services and their coping strategies. This study concludes that caregivers of HIV infected children within the public hospital setting, experience numerous psycho-social and economic challenges on a daily basis. Subsequently, these challenges impacted on the quality of care to the HIV infected child. It was evident that respondents dealt with challenges differently, as the older respondents were more equipped emotionally and psychologically than the younger respondents. Generally, all respondents were negatively affected by poor psychological and socio-economic circumstances that prevented them from ensuring the wellbeing of the child. The challenges that they faced on the micro level (economic and psycho-social experiences), the mezzo (stigma, community and family support) and exo levels (health and welfare services) together with the macro level (DOH strategic plans and childcare legislations) determined how they provided for the care of the HIV infected child. Despite these challenges respondents’ resilience and commitment to providing for the health and wellbeing of the HIV infected child was consistent and remained a priority. Multi-level intervention programmes are required to help caregivers cope with their challenges. As such social work practitioners need to take cognizance of the psycho-social, emotional and material support required by caregivers of HIV infected children. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2013.

Social science research on HIV and AIDS has tended to focus on the statistics regarding the spread of the pandemic and the prevention awareness campaigns. However, there has not been much research on the impact that the pandemic has on families and communities at large. Furthermore, although there are international studies very little research has been conducted on caregivers’ education and training locally. Therefore, the current study was done to bridge the gap between literature and practice by conveying findings that are based on a local South African context. The study was conducted in Mpophomeni Township, in Kwazulu-Natal. The research participants consisted of twelve home-based caregivers. The purpose of the study was to explore the informal learning experiences of home-based caregivers from a non-governmental organisation, Siyasiza, in KwaZulu-Natal. The study tried to establish what informed the informal learning experiences of caregivers. The study further investigated how the informal learning experiences were made explicit to inform further learning and also tried to find out what caregivers did with shared information to inform their practices. In order to achieve the objectives of the study a basic qualitative research design was deemed most suitable. The situated and experiential learning theories informed the study and were also used as lenses in the thematic analysis of data collected through observation, focus group discussions and in depth interviews. The findings of the study showed that caregivers’ informal learning experiences were informed by both intrinsic and extrinsic factors. The loss of own family members influenced caregivers to join the community home-based caregiving initiative to assist families affected by the pandemic. Furthermore, caregivers’ informal learning experiences were driven by career-directed ambition, exemplary learning and second chance learning. The findings further indicated that, for some caregivers, once new information was obtained, it was compared with the related prior knowledge, looked at for similarities or differences, and the value added to the previous experiences was determined. The study also found that caregivers valued and appreciated the information sharing sessions which improved their future practices and so made their jobs a bit easier. Lastly, the study found that caregivers played a huge role in supporting the families affected by HIV and AIDS since they mediated between homes and hospital by providing basic health services. / Thesis (M.Ed.)-University of KwaZulu-Natal, Pietermaritzburg, 2014.