MSc Physiotherapy, Faculty of Health Sciences, University of the Witwatersrand, 2009 / HIV is having devastating effects on Africa as a whole and more specifically on Sub-Saharan Africa. Children are vulnerable to the disease and in most cases being hit the hardest. Parenting at the best of times involves some form of stress, and caring for a chronically ill child increases the parenting stress levels. Antiretroviral treatment has a positive effect on children with HIV, however it is not well understood what effect antiretroviral treatment has on the parenting stress levels of the caregivers of children with HIV. The aim of the study was to establish whether caregivers of children diagnosed with HIV show a change in stress levels after commencement of anti-retroviral treatment for their children. The objectives of the study were: to determine if any of the subsections of the PSI-SF were affected by the commencement of antiretroviral treatment in the children; to determine if a correlation existed between the CD4 count of the child and the parenting stress level of the caregiver and to determine whether the age of the child impacted on the scores of the PSI-SF. The demographic data of the participants were also analysed. This study involved secondary analysis of existing data for the study "A longitudinal study of neurodevelopmental delay in HIV positive children" conducted by Joanne Potterton utilising a longitudinal pre-post test study design where participants were compared to their own baseline scores. The Parenting Stress Index Short Form (PSI-SF) was used to establish the parenting stress levels within its three different subsections. The PSI-SF was completed by the caregivers at visit one, two and three. These visits were to the Harriet Shezi Clinic at Chris Hani Baragwanath Hospital, Soweto, Johannesburg. The children were antiretroviral naïve at visit one, and at visit two which was six months later, they commenced antiretroviral treatment with a six months follow-up which was visit three. iv Forty-five participants were included in the study. The paired ‘t’ test showed a significant change (‘p’ = 0.02) in the subsections Parent Child Dysfunctional Interaction and Difficult Child(change in mean -3.31 and -2.78 respectively), while the subsection of Parenting Distress had no significant change between visit one and visit two (change in mean -2.09). The change in mean between visit two and three was -1.84 for the Parental Distress subsection, 0.6 for the Parenting Child Dysfunctional Interaction subsection and 0.8 for the Difficult Child subsection. The paired ‘t’ test was applied to visit one and three and the subsection Parenting Distress showed the greatest positive change of 'p' = 0.00 with a change in mean of -3.93. There was no correlation between the CD4 count of the child and the PSI of the caregiver at any of the visits (r=-0.2, 0.11,0.3, p=0.15, 0.5, 0.06 respectively). There was no correlation between the age of the child and the parenting stress of the caregiver at any of the visits (r=0.13,0.08,0.5 p=0.39,0.6 and 0.1 respectively). The stress levels of the caregivers decreased over the study period however there was no significant decrease with the commencement of antiretroviral treatment.

M.Dent.(Community Dentistry), Faculty of Health Sciences, University of the Witwatersrand, 2009 / Title: Knowledge, Attitudes and Practices of caregivers about oral lesions in HIV positive patients in NGOs /CBOs in Region 8, Johannesburg, Gauteng. Background: The HIV pandemic continues to be a major public health problem in South Africa where 11% of people were infected with HIV in 2005(HSRC, 2005).The care and support of these patients as they eventually become ill will necessitate the increase in use of community-based/homebased/ hospice institutions. The City of Johannesburg (CoJ), one of the metropolitan municipalities (local government) in Gauteng Province-SA, has been planning the development and implementation of programmes related to the prevention, care and support for people infected and affected by HIV/AIDS. Care and support has been limited to 18 NGOs/ CBOs. Four of these institutions provide palliative care and are staffed by 64 caregivers. Studies done throughout the world indicate that oral lesions associated with HIV occur in over half of HIV/AIDS patients. These oral lesions seriously impair the oral-health-related-quality of life in affected individuals and necessitate the need to provide services to alleviate them and improve patient comfort. The caregivers in the NGOs/CBOs are therefore pivotal in offering care and support in the management of HIV including the management of oral lesions. In order for the caregivers in the NGOs/CBOs to be able to manage the disease in its entirety; they need optimal knowledge of the infection/illness including the oral manifestations associated with the ailment. Objectives: (1.) To determine the knowledge of the caregivers in the NGOs/CBOs providing palliative care in Region 8, CoJ, Gauteng regarding common oral manifestations associated with HIV. of the caregivers in the NGOs/CBOs . (2.) To assess the attitudes of the caregivers in the NGOs/CBOs providing palliative care in Region 8, CoJ, Gauteng on common oral manifestations associated with HIV. (3.) To determine the practices of the caregivers in the NGOs/CBOs in Region 8, CoJ, Gauteng, pertaining to the common oral manifestations associated with HIV. (4.) To determine the sociodemographic profile of the caregivers providing palliative care in the NGOs/CBOs in Region 8, CoJ, Gauteng. Methods: A descriptive cross-sectional study was conducted where all caregivers providing care and support in the four NGOs/CBOs were invited to participate in the study. Data was collected by a customised questionnaire to obtain information on demographics, knowledge, attitudes and practices on providing for HIV positive patients. Results: The results were grouped according to training in oral health care (TOHC) and no training (NTOHC). The mean age was 43.5 years for TOHC and 30.8 years NTOHC and was statistically significant (p<0.005). There were statistical significant differences in the gender proportions in within groups in the both groups, employment status, work experience as a caregiver and training in general home-based care (p<0.05). Most (72.2%) of those NTOHC had little experience (<1 year) of care giving compared to 41.1% (p=0.03) and 33.3% were providing care without training in homebased care (HBC) compared to 100% (p=0.00). The caregivers trained in oral health care had knowledge levels shown by higher knowledge levels on four of seven variables compared to those who were not trained in oral health care (p< 0.05, Table 3.3 p.21). The majority of caregivers NTOHC reported that caring for the mouth of HIV positive patients is an ‘unpleasant difficult task and poses an infection risk to the caregivers’ while these concerns were expressed by the minority of caregivers TOHC (p<0.05). Practices performed by caregivers NTOHC were appropriate for dry mouth, difficulty in swallowing but was inappropriate for bleeding gums and bad breath while those caregivers TOHC provided appropriate advice/practices for oral thrush, bad breath, bleeding gums, dry mouth with statistical difference. Conclusion: The caregivers TOHC had fairly better knowledge, attitudes and practices regarding oral lesions in HIV compared to those NTOHC. There was strong likelihood of knowledge variables and training in oral health care. Recommendations: Bearing in mind the limitations of KAP surveys and the cross sectional nature of the study, it is recommended that training in oral health care and refresher courses for those trained must be incorporated into the programme of all caregivers working in palliative institutions because it will provide specialised knowledge about oral health and oral lesions in HIV improve their knowledge, attitudes and practices and thus provide a better service to their patients.

Background No data exist about caregivers’ beliefs surrounding a diagnosis of cerebral palsy (CP), its causes and how this influences caregivers’ perceptions of therapy in poorly-resourced South African settings. Neither is there any information about how rehabilitation therapy influences the life of the child or the caregiver. The appropriateness, the outcomes and the effectiveness of therapy for children with CP in a South African setting have not been studied. Numerous tools and scales for measuring outcomes of rehabilitation relating to both the child and the caregiver are available internationally but none have been validated for use in South Africa. Caregiver-related outcomes were the focus of this study and included maternal well-being and mental health, personal quality of life, availability of support and interaction with the child. These are factors known to potentially be influenced through contact with rehabilitation services. Aims The aims of this study were firstly to ascertain whether caregiver-related outcome measures developed in high-income settings were appropriate for a poorly-resourced South African setting; and secondly, to describe parental perceptions and experiences of rehabilitation therapy received in public service hospitals in disadvantaged areas. Methodology The study was undertaken in two phases. Phase One was a quantitative cross-sectional, analytical study and addressed the first aim. Five scales were identified from the literature as being suitable for measuring the caregiver-related outcomes of interest in this study: the Caregiver-Child Scale, the Family Support Scale, the Personal Quality of Life Scale, the Mental Health Subscale of the Medical Outcomes Study (MOS) Short-form 20 Health Survey, and the Measure of Processes of Care (MPOC) Scale. The first four scales measure aspects of maternal well-being and interaction with the child whilst the MPOC assesses caregivers’ reported experiences of family-centred behaviours of rehabilitation service providers. These scales were modified and adapted to make them relevant to a South African setting through a process that included focus groups with caregivers and experienced therapists. After the modified scales had been translated into six local languages and then back-translated into English, the translators, researcher and interviewers met to discuss discrepancies between the two versions (the original modified English version and the back-translation) and to reach consensus on the final translation. The scales were further refined during a pilot study where two trained interviewers administered the modified scales to 24 caregivers of children attending public service hospitals for therapy. Items in the scales which were confusing for caregivers or which they found difficult to understand were clarified. In addition, where necessary, concrete examples were given of the type of behaviour or action being asked about in the scale. Following the pilot study, two trained interviewers administered the modified scales to a convenience sample of caregivers attending rehabilitation therapy in public service hospitals in Gauteng and Limpopo. The reliability and validity of each scale was assessed using multi-trait scaling and factor analysis. Phase Two employed qualitative methodology to address the second aim of the study. A purposive sample of 24 information-rich caregivers attending therapy in public service hospitals in Gauteng and Limpopo participated in one of five focus groups. The discussions were conducted in local languages. Taped recordings were transcribed and translated into English before being analysed using a grounded theory approach. Results Two hundred and sixty three caregivers from 31 hospitals in Gauteng and Limpopo provinces were interviewed during the first phase of the study. The mean age of their children was 3.3 years (± 2.6).Two-thirds of the children (66%) had severe limitations in motor function and few (15%) could communicate verbally. Only one of the five scales, the Mental Health Subscale, proved to be both reliable and valid in South African settings. A second scale - the MPOC - was potentially useful if reduced to an eight item scale (from the original 20 items). The Family Support Scale was reliable but not valid whilst the Caregiver-Child and Personal Quality of Life Scales were neither reliable nor valid. The process of administering the scales combined with the qualitative data helped to explain why the scales did not perform as well as expected in a South African setting. Reasons for these findings included the caregivers’ inexperience in completing these kinds of questionnaires; their difficulty with the concept of grading their responses which meant that Likert-type scales were difficult for them to complete; and thirdly language and cross-cultural applicability. This was because the scales were developed for very different cultural groups. It was not the questions or scale items that were the problem; it was rather finding the language and words that caregivers themselves would use to express the underlying concepts. The study found that caregivers living in disadvantaged South African settings live very differently from their counterparts in well-resourced areas. They lived in poverty; were beset by financial concerns; often abandoned and rejected by their partners; and endured gossip and ignorant attitudes from their neighbours and the community. The burden of daily care-giving was high as most of the children were severely disabled. This was compounded by concern about the child’s health and the future. Despite this, the study found that they were happy, healthy and generally well satisfied with their lives. Support from informal support structures such as relatives and close family members, together with formal support structures, was an important dimension in helping caregivers cope. Qualitative data from the focus groups yielded information regarding caregivers’ beliefs surrounding the perceived cause of the child’s disability. These ranged from traditional and cultural beliefs to medical explanations, and to frank confusion between the two. This was accompanied by misconceptions about therapy and the outcome thereof. Parental perceptions and experiences of rehabilitation were positive although many caregivers initially expected therapy to provide a cure. Respectful and caring attitudes, “hands on” therapy, practical help and assistance with assistive devices and school placements were aspects of service most valued by caregivers. The study helped define the components of an “ideal” therapy service in disadvantaged South African settings. They would include the availability of parent support groups; greater involvement of fathers, close family members and traditional healers in the rehabilitation process as well as the implementation of innovative strategies to ensure clearer communication and understanding between therapists and caregivers operating in a cross-cultural setting. Elements of care not traditionally perceived as part of therapy such as promoting supportive networks and taking on advocacy role for children with disabilities may offer additional advantages. Conclusion The study confirms the view that scales developed in high-income settings are not necessarily immediately applicable to less well-resourced settings and often require extensive modifications to ensure reliability and validity. Whilst the Mental Health Scale is a reliable and valid tool for caregivers attending public service hospitals in South Africa, other scales, such as the MPOC, a popular scale in North American and Europe, require substantial modification for a South African setting. In addition to highlighting the challenges involved in finding suitable outcome measures of therapy intervention for this population, this study has objectively documented the lives and experiences of caregivers of children with CP in South Africa for the first time together with their experiences and perceptions of rehabilitation therapy. Using this information, the components of an “ideal” rehabilitation service in a disadvantaged South African setting have been identified and described. This may facilitate the establishment of a more effective and appropriate therapy service for caregivers and children with CP living in poor areas.

In this research project I examine art making as a supportive intervention towards creating a safe environment for the caregivers in order for them to identify with the social worlds in which they inhabit. I have focused on the role of art making within a community of volunteer caregivers on the East Rand in Johannesburg. The dual tenets of dialogical and relational aesthetics are acknowledged in the elaboration of concepts to establish wider contexts. Whilst art therapy modalities and literature have been used, this research project does not embrace the scope of art therapy as a discipline. At times I have used lexis from art therapy to draw on certain terms. My subject position as an artist and facilitator in this project has given me the agency for the discourse of dialogue to take place. The inquiry for this research dissertation is concerned with whether the participants in the project were able to achieve some amelioration from their circumstances through the relational exchange so that art as the mediator for conversational exchange is seen to facilitate constructive models for engagement. My contention is that these conditions have allowed the caregivers to achieve this outcome.

by Wong Fu Keung. / Thesis (M.S.W.)--Chinese University of Hong Kong, 1991. / Includes bibliographical references. / Acknowledgement / Abstract / Chapter Chapter 1 --- Introduction --- p.1-3 / Chapter Chapter 2 --- Circumstances Leading to Problems and Stress Experienced by Caregivers of Mentally Ill --- p.4 -15 / Chapter Chapter 3 --- Literature Review of the Concepts of this Study --- p.16 -45 / Chapter Chapter 4 --- Literature Review of the Interrelationships of Variables Under Study --- p.46 -53 / Chapter Chapter 5 --- Research Methodology --- p.54-57 / Chapter Chapter 6 --- Results --- p.68 -149 / Chapter Chapter 7 --- Discussions --- p.150-155 / Chapter Chapter 8 --- Recommendations --- p.167 -171 / References / Chapter Appendix A --- Questionnaire (Chinese Version) / Chapter Appendix B --- Questionnaire (English Version)

Few research studies have examined the panoramic landscape of family caregivers from dementia diagnosis to the final bereavement of the person with dementia for whom they are caring. The route and pathways of care undertaken during a caregiver's journey will be individual to each person, yet invariably there will be some similarities as to how they anticipate, approach and mange this journey. From the caregiver's perspective, caring for someone with dementia is related to more than the cognitive loss experienced by their family member, there are many losses involved, This research study aims to explore the complex emotional experiences of thirty caregivers in relation to sense of self. change, grief, loss and bereavement, to elucidate a deeper understanding of the lived experience, the perceived and understood reality of the experiential journey of caregivers. To explore the experiences of caregiving, this research study uses a hermeneutic phenomenological approach and draws on an adaptation of the theoretical framework of anticipatory grief and loss by Fulton and Fulton (1971) and Fulton and Gottesman (1980). The study uses a convenience sample and semi structured interview format and involves two non-comparative participant groups of family caregivers living in urban and rural communities within the North East of England. Group one comprises of twenty bereaved participants, nineteen of whom are spousal caregivers and one adult-caregiving daughter, who were interviewed once to explicated a retrospective perspective of the caring experience. Group two comprises of ten participants, nine spousal caregivers and one adult-caregiving daughter, who are currently caring for a family member living with an advanced stage experience of dementia. Group two participants were interviewed on three occasions across an eighteen-month time period to explore the retrospective and prospective experience of their caregiving role. The analysis of data reveals expressions of change, grief and loss within a complex and tri-dimensional landscape. Within this landscape, participants highlight defined periods of their journey, particularly with regard to their experience of a protracted middle period, which they referred to as being "the long road". However, intersecting with this layered landscape, the analysis of data also reveals a key aspect of caregiving - the emergence of a conceptual framework involving three interconnected yet fluctuating schemas of self experienced by participants. the first scheme, the individual 'me-self'. related to the participant's perception of their core self and envisaged sense of self. the second schema, the 'relationship-self', illustrates participant's physical and psychological experiences and bonded connection between themselves and the cared-for spousal partner or parent, as well as other family members and care workers. The third schema, the 'caregiving-self', is associated with the acquisition and undertaking of their role of familial caregiver. The findings of this study highlight the 'lived-world' experience of family caregivers as being a journey which subjects them to a cyclical maelstrom of emotion and fluctuating perception of their schemas of self.

Background: Dementia, which affects an estimated 35 million individuals worldwide, is now recognised as a growing health and economic problem. With insufficient levels of health and welfare services in many nations, there exists a reliance on family caregivers to provide care for individuals with dementia (IWDs). However, the potential negative psychological and physical consequences of the caregiving role cannot be ignored. A growing literature base has improved the theoretical understanding of mental health difficulties (e.g. depression, burden) in caregivers. However, significant gaps in the research remain. These include understanding outcomes such as caregiver anxiety and examining the role of potentially crucial variables, such as levels of suffering and empathy. Objectives: An empirical study was conducted in order to add to the literature regarding depression and anxiety in spousal caregivers of IWDs. This research conducted exploratory analyses of the relationships between the suffering of IWDs, IWDs' depression and anxiety, caregivers' levels of empathy, caregiver satisfaction and caregiver anxiety and depression. Caregivers' anxiety and depression is considered in the context of research on co-morbidity. In addition, the levels of discrepancy between ratings of suffering, whereby caregivers frequently report IWDs to be suffering more than IWDs self-report, were also examined. A systematic review was conducted in order to evaluate the effectiveness of psychosocial interventions for anxiety in informal caregivers of IWDs. Method: For the empirical study, a cross-sectional survey methodology was employed where dyads of caregivers and IWDs completed questionnaires during face-to-face interviews. Primary variables examined were the suffering of IWDs, IWDs' levels of depression and anxiety, and caregivers' levels of empathy, satisfaction, depression and anxiety. The suffering of IWDs was rated both by the IWDs (self-reported suffering) and the caregivers (perceived suffering). Descriptive statistics and exploratory correlational analyses were used to address a number of exploratory research questions regarding the relationships between the investigated variables. For the systematic review, five scientific databases were searched for relevant randomised controlled trials (RCT). Study quality was assessed according to standardised, recommended criteria and a qualitative synthesis of the evidence, including effect sizes, is described. Results Results from the empirical study suggest high levels of clinical anxiety in the caregiver population. In the current sample, there was a high prevalence rate of anxiety (52.5%) and a lower rate of depression (15.0%). However, there were no statistically significant correlates for caregiver anxiety and depression found. Findings are discussed in the context of previous research, the demographics of the current sample and difficulties with recruitment. For the systematic review, twenty studies with substantially different methodological quality were included. Anxiety was rarely identified as the primary outcome measure. However, the evidence suggests that Cognitive Behavioural skills training and psycho-educational interventions can be effective in treating caregiver anxiety. Some preliminary evidence for interventions underpinned by Mindfulness-based strategies was also found. Conclusions: The empirical study found that a large proportion of Scottish spousal caregivers experience clinical levels of anxiety. This suggests that caregiver anxiety must be a key priority for both clinicians and researchers alike. In addition, further research examining these understudied variables and using dyadic methods remains crucial to increasing understanding into caregivers' outcomes. The systematic review demonstrated that research regarding interventions for anxiety in caregivers is growing and there is now a greater emphasis on the underlying theoretical models of delivered interventions. There is also growing evidence that interventions with clear theoretical basis may be more likely to be effective. However, both the empirical study and the systematic review highlight further questions that remain to be addressed in the literature. Further research continues to be necessary in this area to ensure that services are appropriately meeting the needs of both caregivers and IWDs.

ABSTRACT This study investigated the quality of care provided to children between 0 and 36 months in Limpopo Province. A non-experimental, quantitative, cross sectional descriptive design was used. The researcher developed two research instruments: • a questionnaire which collected information on registration, training, services provided stimulation programs, referral and equipment. • an observation sheet which recorded information on the premises, the staff, equipment and office, toys, outdoor play area, sleeping and dining areas. 111 subjects participated in the study- 19 day mothers in urban areas and 92 caregivers in more rural areas. Descriptive statistics were used to summarize the data in the questionnaire and the mean values for the two samples from the observation were compared using a t test. Results suggest that the quality of care provided by both day mothers and caregivers is below the accepted overall mean of 3 for all variables examined except day mother’s premises. Caregivers at care centres were better trained and offered more stimulation programmes than day mothers. They also scored better than day mothers with respect to staff and equipment with toys and dining areas being significantly better. Day mothers scored marginally higher than caregivers with respect to outdoor play and sleeping areas.

Acute rehabilitation hospitals assist brain injury patients and families who face a life- changing event to achieve greater independence and quality of life. During the acute rehabilitation phase of recovery, care is focused on the patient; however, there is a nationwide movement to implement patient- and family-centered care because caregivers experience grief and uncertainty about how to care for their loved one during hospitalization and upon discharge. The purpose of this staff education project was to educate rehabilitation staff on how to identify and to meet the needs of family members of brain injury patients in an acute rehabilitation center in the western United States. The patient- and family-centered care theoretical framework and Knowles's theory of adult learning supported the development and implementation of the educational program. The project site stakeholders identified educational opportunities to assist staff to meet caregiver needs and improve outcomes. Thirty-two staff including registered nurses, licensed vocational nurses, patient care technicians, and nurse managers, received education for the support of caregivers for patients with brain injuries. The program was evaluated using a 5-point Likert type questionnaire. After receiving the education all participants agreed or strongly agreed that content increased their knowledge, skills, and confidence in caring for family caregivers of brain injury patients. Implications of this project for social change include the potential to improve patient outcomes through caregiver knowledge and skills to provide care to patients with brain injury.

The issue investigated in this thesis concerned the adaptive coping strategies that caregivers of the mentally ill adopt at different stages of encounter with their family member’s illness. Specifically, family caregivers’ responses to the illness were investigated within the parameters of the Spaniol and Zipple (1994) 4-stage model of the evolution of caregivers’ responses to mental illness. The accuracy of the model’s representation of the experience of caregivers across all kinship relationships to the care-recipient was evaluated. Spaniol and Zipple proposed four stages which they termed (1) Discovery/Denial, (2) Recognition/Acceptance, (3) Coping and (4) Personal/Political Advocacy. The first stage is characterised by persistent denial of mental illness and seeking answers from multiple sources. The second stage involves caregivers’ expectations of professionals providing answers when the illness is recognised. At this stage caregivers experience guilt, embarrassment and blame. The cyclical nature of the illness impedes acceptance and caregivers experience a deep sense of loss and crisis of meaning as they gradually accept the reality of the situation. In the third stage coping replaces grieving and the issues encountered include loss of faith in professionals, disruption to family life and recurrent crises. Belief in family expertise grows and the focus of coping changes. The fourth stage proposes that caregivers become more assertive, self-blame decreases and the focus is upon changing the system. New meanings and values are integrated. This study found that the model did not accurately describe the experience of all caregivers. Caregiver did not deny mental illness and adaptive coping occurred throughout all stages. Coping evolved as the issues encountered changed and was independent of resolution of grief. The issues encountered were more extensive than the model proposed and differed according to kinship relationship to the care recipient. The ways in which adaptive coping evolved were identified, as were the issues and their accompanying responses. Caregivers coped by adaptively responding to the requirements of care provision, maintaining a sense of self worth and generating positive effect.