Indiana University-Purdue University Indianapolis (IUPUI) / Type 2 diabetes, a chronic condition affecting millions, continues to rise in epidemic proportions. Type 2 diabetes, managed through lifestyle changes, affects the entire family. Family caregivers provide vital support to these individuals; however, little research has been conducted surrounding the perceived difficulty or ease of caregiver activity and supportive behaviors. The purpose of this dissertation was to develop and psychometrically test a scale that measures this difficulty or ease of activities and behaviors. This was accomplished through the compilation of three distinct manuscripts. First, an integrative review was conducted to identify what is known regarding needs and concerns of family caregivers of persons with type 2 diabetes; findings revealed a need for more research. Then, based on these recommendations, a qualitative study was conducted that explored the needs and concerns identified by 33 American Indian, African American, and White family caregivers. All these caregivers had similar concerns related to needing general diabetes information, providing support to the family member, and taking care of their own health. Study themes were used to develop items for a new instrument, the Diabetes Caregiver Activity and Support Scale (D-CASS) that was psychometrically tested with 101 American Indian, African American, and White family caregivers of persons with type 2 diabetes. This study used a cross-sectional, descriptive-correlational design and provided evidence of internal consistency reliability (α = .82) and two-week test-retest reliability (intraclass correlation coefficient = .70) for the D-CASS. Criterion-related validity was established using a single-item criterion measuring overall how easy or difficult it was for caregivers to provide care for their loved ones (r = .65, p < .01). Unidimensionality was supported by factor analysis, with loadings ranging from .45 to .70, with 32% of the variance explained by the first factor (eigenvalue = 4.02). Model testing through a series of three hierarchical multiple regressions guided by a conceptual model provided further evidence of construct validity for the D-CASS. This dissertation provided better understanding of needs and concerns of family caregivers of persons with type 2 diabetes and led to the development of a psychometrically sound diabetes-specific instrument for future research.

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.

Thesis submitted in fulfilment of the requirements for the degree Master of Technology: Design in the Faculty of Informatics and Design at the Cape Peninsula University of Technology, 2012 / Home-Based Health Care (HBHC) is the provision of health services and social assistance to individuals in their homes. It is an indispensable service to communities in need; presently in South Africa, these health care services are provided by local non-profit and non-governmental organizations. It is mainly targeted at poverty-stricken and under resourced communities and is an important aspect of healthcare in South Africa. A lot of communities in South Africa are still under-resourced and live in impoverished conditions. This is reflected in poor living standards characterized by unemployment, uneasy access to basic amenities, unequal distribution of wealth, poor medical facilities in rural communities, etc. The prevalence of the HIV/AIDS endemic has also worsened the situation. However, the South African government has constantly supported initiatives to enhance better healthcare in rural communities. This research presents a case study of caregivers working in Du Noon, an informal settlement in Western Cape, South Africa. Du Noon is overpopulated and home to lots of foreigners who have migrated in search of better living standards thus stretching an already over-burdened community. Naturally, this development supports poor health practices which encourage the spread of diseases within the community. Health facilities do not sufficiently cater for the ever-increasing healthcare demands and as such lots of people depend on NGOs such as SALT (Sharing Abundant Life Together) who through the help of caregivers and community workers have been providing for some of the healthcare needs of the Du Noon community since 2000. Findings reveal that although caregivers in this community have lots of stories to share about their work practices, they do not have a platform to share these stories. This research focuses on identifying processes involved in capturing these stories and moderating them into educative and entertaining visual contents for the purpose of sharing the stories within the community. Using qualitative research methods, empirical and field study provides the needed data as well as understanding of the multi-dynamism of this community. Data analysis is done through interpretive methods for the purpose of understanding the data collected and analysed during the research process. Finally, as a possible research contribution, the research concludes by examining how other technology can enhance the storytelling experience using interaction design methods that enables caregivers participate in the entire design process. Suggestions are also given as to direction for further research within the subject area.

The purpose of this study was to explore the lived experiences of older caregivers of adult AIDS ill children in Umlazi Township in the province of Kwa- Zulu Natal. A qualitative research design which was exploratory was executed with a sample of purposively selected participants who are the members of the organization that provides support to the older caregivers. Data saturation occurred after focus group and in depth individual interview with ten participants. The findings revealed that older caregivers experience lot of challenges which ranges from emotional, physical, financial, psychological, social and time constraints when caring for their adult AIDS ill children .The study further revealed that older caregivers developed a wide range of coping strategies to face their challenging caregiving task and most of the older caregivers utilized positive coping strategies. Recommendations that are described focus on the inclusion and consultation of older caregivers in all decisions and programmes about them. / Appendix C (Interview guide) in English as well as in Zulu / Social Work / M.A. (Social Behaviour Studies in HIV/AIDS)

The purpose of this study was to explore the lived experiences of older caregivers of adult AIDS ill children in Umlazi Township in the province of Kwa- Zulu Natal. A qualitative research design which was exploratory was executed with a sample of purposively selected participants who are the members of the organization that provides support to the older caregivers. Data saturation occurred after focus group and in depth individual interview with ten participants. The findings revealed that older caregivers experience lot of challenges which ranges from emotional, physical, financial, psychological, social and time constraints when caring for their adult AIDS ill children .The study further revealed that older caregivers developed a wide range of coping strategies to face their challenging caregiving task and most of the older caregivers utilized positive coping strategies. Recommendations that are described focus on the inclusion and consultation of older caregivers in all decisions and programmes about them. / Appendix C (Interview guide) in English as well as in Zulu / Social Work / M.A. (Social Behaviour Studies in HIV/AIDS)

Seventeen grandparent caregivers, who have primary responsibility for one or more grandchildren and do not have a parent of the grandchildren living in the household, were interviewed to evaluate the effectiveness of the services offered by Kinship Family Center (KFC), a non-profit support agency for relative caregivers and the children in their care. Kinship Family Center is a program of the Central City Lutheran Mission and is funded by the San Bernardino County Department of Children's Services. The researchers found that KFC was an effective asset for informal grandparent caregivers. For grandparents, it was a source of support and comfort in their role of "second time around parents." For children, it served as a means to help identify with other children in similar situations.

Text in German / Die gesellschaftliche Situation ändert sich stetig. Während früher alte Menschen zu Hause von ihren Familien gepflegt wurden, übernehmen heutzutage oft Altenpfleger diese schwere Aufgabe. Betrachtet man die Altenpflege, so lässt sich erkennen, dass die Pflege alter, kranker oder im Sterben liegender Menschen für die Mitarbeiter physisch und psychisch sehr belastend ist. Angesichts dieser Tatsache, besteht die Notwendigkeit ein differenziertes Personalentwicklungskonzept, das biblisch diakonische Grundprinzipien widerspiegelt, zu formulieren. Die vorliegende Arbeit zeigt deren Möglichkeiten und Potentiale auf. Sie untersucht und beschreibt entsprechende Prinzipien, unter anderem anhand des Ansatzes H.U.M.O.R. und des Modells „Pflege den Pflegenden". Diese Konzepte wurden im „Luise-Schleppe-Haus und Schloss", einer der traditionsreichsten Altenhilfeeinrichtungen Baden-Württembergs entwickelt. Die Darstellung und Untersuchung dieser Konzepte, sowie die Sichtung weiterführender Literatur eröffnet neue Perspektiven für die Personalentwicklung in der Altenhilfe. Der christlich ethische Aspekt von Führung wird berücksichtigt. Auf der Basis der erarbeiteten Prinzipien der Mitarbeiterentwicklung gibt die Masterarbeit Anregungen für die Praxis. Formerly elderly people were taken care of at home by their families. Nowadays this difficult task is often assigned to professional nurses. In closer analysis of their task it becomes evident that helping the very old, ill and dying people constitutes a physical and mental strain. This necessitates the development a differentiated concept of human resource development that reflects the fundamental Biblical diaconal principles. This dissertation analyses the opportunities and potentials of such a concept. It researches and describes appropriate principles, amongst others the approach of H.U.M.O.R. and the model of Care for Caregivers (Pflege den Pflegenden). These concepts were developed in the "Luise-Schleppe-Haus und Schloss", a geriatric facilities in Baden-Württemberg, Germany, of long standing. The analysis combined with further literature opens up new perspectives for the human resource development in the care for the elderly and the ethical aspects of leaderhship in this context. / Systematic Theology and Theological Ethics / M. Th. (Christian Leadership in Context)

The AIDS pandemic has generated a large number of orphaned and vulnerable children (OVC) in Swaziland, as it affects the reproductive age group. Most of the OVC are being cared for by their grandparents who are old, poor and suffer from degenerating diseases of old age. The purpose of this study was to explore and describe the needs and support available for OVC under the care of grandparents in the informal settlements of Mbabane, Swaziland in order to develop guidelines for their care and support. A qualitative, exploratory, descriptive and contextual study was conducted to identify the needs of the OVC and type of support provided by organizations for these children. Data was collected using unstructured and semi-structured interviews. The study was conducted in three phases each addressing a research objective. In the first phase which was to identify the needs of OVC, twelve grandparents who cared for OVC in the informal settlements participated. For the second phase seven managers of organizations that provide support to OVC in the informal settlements participated. The third phase was the development of guidelines by the researcher and validated by participants and experts. The study highlighted the needs of OVC, the nature of the existing support structure and type of support provided by organizations for these children. The findings revealed that the OVC have developmental support, protection support, psychosocial support and support for survival needs. The themes identified from the analysis of the type of support provided by organizations were developmental, partnership, protection, psychosocial and support for survival needs. The organizations' support was inconsistent and inadequate to meet these needs due to the large number of OVC. Some of the weaknesses of organizations were indicated as donor dependency and lack of coordination and collaboration among organizations. The study highlighted partnership as fundamental to the successful implementation of the guidelines. / Health Studies / D. Litt. et Phil. (Health Studies)

The AIDS pandemic has generated a large number of orphaned and vulnerable children (OVC) in Swaziland, as it affects the reproductive age group. Most of the OVC are being cared for by their grandparents who are old, poor and suffer from degenerating diseases of old age. The purpose of this study was to explore and describe the needs and support available for OVC under the care of grandparents in the informal settlements of Mbabane, Swaziland in order to develop guidelines for their care and support. A qualitative, exploratory, descriptive and contextual study was conducted to identify the needs of the OVC and type of support provided by organizations for these children. Data was collected using unstructured and semi-structured interviews. The study was conducted in three phases each addressing a research objective. In the first phase which was to identify the needs of OVC, twelve grandparents who cared for OVC in the informal settlements participated. For the second phase seven managers of organizations that provide support to OVC in the informal settlements participated. The third phase was the development of guidelines by the researcher and validated by participants and experts. The study highlighted the needs of OVC, the nature of the existing support structure and type of support provided by organizations for these children. The findings revealed that the OVC have developmental support, protection support, psychosocial support and support for survival needs. The themes identified from the analysis of the type of support provided by organizations were developmental, partnership, protection, psychosocial and support for survival needs. The organizations' support was inconsistent and inadequate to meet these needs due to the large number of OVC. Some of the weaknesses of organizations were indicated as donor dependency and lack of coordination and collaboration among organizations. The study highlighted partnership as fundamental to the successful implementation of the guidelines. / Health Studies / D. Litt. et Phil. (Health Studies)

Text in English / With the Acquired Immune Deficiency Syndrome (AIDS), first recognised in 1981 as a new disease that subsequently took on pandemic proportions, home-based caregivers became instrumental to ensure that, notwithstanding the encumbered health care systems, people living with HIV and AIDS (PLWHA) receive care, support and treatment within their households to live prolonged dignified lives. Despite their pivotal role in the field of HIV and AIDS care, there seems to be a dearth of literature, and research locally and internationally, from the ambit of Social Work on the topic of how HBCGs manage and cope with the work-related challenges they experience when caring for PLWHA and their need for Social Work support. Through this exploratory, descriptive, contextual and phenomenological qualitative study, I scrutinised the HBCGs’ experiences and associated challenges and the coping strategies they employ to address these challenges as well as their views on how social workers could support them in overcoming these challenges in the specific case on home-based care to PLWHA. Twenty-five HBCGs were identified and recruited through purposive and snowball sampling techniques from twelve home-based care organisations in South African provinces, namely, North West, Limpopo and Gauteng. Data was collected through individual face-to-face semi-structured interviews using an interview-guide. Data analysis was conducted through Tesch’s eight steps (in Creswell 2014:189) while Guba’s model (in Shenton, 2004) was adopted for data verification. Cast against Loretta Williams’ (2014) middle range theory of caregiving dynamics (Williams 2014), the coping theory of Lazarus and Folkman (1984) and the strength-based perspective (Saleebey, 2013) adopted as theoretical frameworks for this study, the following findings were revealed. The HBCGs were motivated by, among other factors, their mere desire to care for PLWHA; their personal experiences of caring for an ill relative; and future career aspirations to become involved in this care work. HBCGs were found to face various work-related challenges in connection with reactions from community members, the patients and their relatives; their unsafe working conditions; as well as from their colleagues, other role players and their own organisations. It was found that for most of the HBCGs their care work saddened, pained and discouraged them. In the midst of feeling sorry for their patients, they feared getting infected themselves, in addition to their work-related challenges that caused them to experience feelings of failure. The strategies adopted to cope with their work-related challenges included getting support from employers, receiving counselling and becoming involved in support groups. Finally, several suggestions were directed to the management structures of HBC organisations, the HBCGs themselves and social workers on how they could address the work-related challenges. Based on the research findings, some recommendations are forwarded concerning guidelines for Social Work support directed at work practice, policies and programmes; associated education and training endeavours; and continuous professional development initiatives, as well as avenues for further research. / Social Work / D. Phil. (Social Work)