The high prevalence of HIV/AIDS in Zambia has led to the development of innovative ways of coping with sickness related to this infection. HIV/AIDS home-based care is one such innovation designed in Chikankata Hospital in 1987. Home-based care depends on the availability of family members and community volunteers in the provision of care and support for People Living with HIV/AIDS (PLWHA).<br /> <br /> This minithesis is based on a qualitative descriptive case study exploring perspectives regarding skills, supervision and support mechanisms for carers in the Chikankata HIV/AIDS Community-Home Based Care (CHBC) program. The study utilized documented research, focus group discussions with carers and structured interviews with local CHBC supervisors, national experts in CHBC, and PLWHA and their families, to collect data from 32 study participants.<br /> <br /> The findings were that CHBC was being delivered by community volunteers with limited involvement from the local health services / that carers were highly motivated, personally and collectively mobilizing resources to meet the needs of CHBC clientele / that local arrangements for training, skills and support of carers were not aligned to national guidelines regarding process, content and duration of programmes / and that carers acquired skills in CHBC through formal and informal training processes and were facing challenges related to inadequate skills, poor infrastructure and extreme poverty in households caring for PLWHA. <br /> <br /> Based on the findings the local arrangements for coordination of CHBC need to be strengthened and linked to formal processes for technical support, financial resources and materials for delivery of CHBC in line with existing guidelines on CHBC. The picture of the real situation of the carers that emerges from this qualitative study might inform the supervising organizations and policymakers on the gaps in the training and support of this crucial cadre in the provision of quality care for People Living with HIV/AIDS (PLWHA) at community level.

Thesis (M.S.)--University of Michigan, 1986.

Thesis (M.S.)--University of Michigan, 1986.

Magister Scientiae (Physiotherapy) - MSc(Physio) / HIV and AIDS are now being considered as a chronic disease. As people live longer the possibility of physical disability increases. This study aimed to investigate the nature of physical disability among HIV/AIDS adults cared for by the Makeni home-based carers in Lusaka, Zambia. Disability was measured based on the World Health Organisation International Classification of Functioning, Disability and Health. This study demonstrated that mostly mild impairments and mild to moderate activity limitations and participation restrictions exists among patients in the Makeni home-based care programme. This study concluded that physiotherapists and other health professionals will have to be more involved in the community home-based programs that are suited for people living with HIV/AIDS so that they are also provided with clinical assessments and rehabilitation services. / South Africa

Acquired Immunodeficiency Syndrome (AIDS) is presenting a real challenge to our Canadian health care system. As the numbers of infected grow, the greater the realization that health care and social services as they currently exist, are unable to adequately address the overwhelming need. With a special emphasis on hospice/palliative care services, which are seen as essential and very appropriate in the care of persons with AIDS (PWAs), this study seeks to evaluate one such service - the Buddy/Home Care Program offered by AIDS Vancouver - as a means of improving this program and illustrating the need to establish others to achieve an integrated hospice/palliative care service. To evaluate the effectiveness of the Buddy/Home Care Program, four PWA Social Networks composed of four Persons With AIDS, five of their buddies, three Home Care Volunteers, two Buddy/Home Care Client Care Case Managers, and four Outside Agency Affiliated Persons, were interviewed using an interview guide approach. The interview guide was designed to tap the individual experiences of everyone associated with the Program, as well as their perceptions of the Program's strengths and weaknesses. Limitations in the study design and implementation arose from sampling, incomplete data, and researcher-related issues. Data analysis followed the dimensional model of the Glaser and Strauss grounded theory. The results are presented utilizing pertinent social network characteristics as a framework. First, each of the four PWA Social Networks are presented and described in relation to size and density. The networks vary in size from 12 to 25, and are characterized by low levels of density. Since the literature indicates that there is a positive association between network size and health status, it follows that the PWA with 12 individuals in his social network would have the lowest health status, while the PWA with 25 would have the highest. But this has not been found to be the case in this study. What is also unclear, is whether larger sized networks cause improved health, or whether health status determines network size. Although low density is far from the ideal prescribed by the hospice/palliative care approach, the literature is conflicting on the association between density and health status, suggesting that this low density is not necessarily undesirable. Second, an examination of the volunteer-client relationship subsystems reveals that the relationships fulfill the Client Care Case Managers expectations, in that the relationships between volunteers and clients range in intensity from being volunteer-client, to friend-friend, to parent-child oriented, and are characterized by a wide variety of emotional, informational, instrumental, and companionship support functions consistent with these relationship dynamics. And third, an examination of the volunteer-agency relationship subsystems reveals high levels of appreciation of informational support provided by the agency through its volunteer training, relatively infrequent contact between volunteers and Client Care Case Managers, variable experiences of emotional support received from Client Care Case Managers, minimal amounts of emotional support received from the Buddy Support Group, and some confusion about which staff members are responsible for volunteers pre- and post-assignment. Recommendations designed to improve volunteer-client and volunteer-agency relationships in the Buddy/Home Care Program, as well as others designed to promote the establishment of an integrated Canadian hospice/palliative care service are presented in conclusion. / Arts, Faculty of / Social Work, School of / Graduate

This study is a multi-method, two-city, intensive, in-depth qualitative study of Huntington's disease (HD) caregivers (HDCs) in Colombia. I explored the Colombia HDCs' experience through the Hispanic culture of caring. I develop the theory of the subrogate agency based on 5 functional stages of HD from Shoulson and Fanh (1979). This study was conducted in two different regions of Colombia, Medellin and Juan de Acosta, in which high rates of HD cases have been identified. The data were collected through three methods: (a) 56 interviews with HDCs and 8 with physicians; (b) 28 participant observations of Huntington's disease sufferers (HDSs); (c) 4 interviews and 8 focus groups of 6 members each with HDCs of late HDSs. Human agency is the ability to monitor one's own action. This study showed that the gradual and serious loss of all capabilities in HDSs has a social effect on the HDSs' agency. HDSs' survival depends on the subrogation that the HDC offers to the HDS. The HDS retains self-hood, i.e. agency, through the HDC's action. This subrogation causes a paradoxical consequence, resulting in both negative and positive effects on the caregiver. The theory of surrogate agency is supported by the data. Through the progressive phases, the capacity of the sufferer for expressing suffering, and social embarrassment, as well as the capacity to fight against the illness and provide reciprocity to their caregivers, deceases. The reason is that physical and cognitive impairments, as well as depression and anger, continue to increase. The study also documented important socio-cultural differences among the study regions. For instance, HDC's solidarity was based on blood and friendship; in larger cities, HD fragmented families. The study also found that HD is taking an immense toll on caregivers, sufferers and families because they are excluded from the Colombia's Basic Health Plan.

MCur / Department of Advanced Nursing Science

Alzheimer's disease (AD) is the most common form of nontreatable dementia, a syndrome which reflects a progressive and global impairment of memory, intellect, and other cognitive abilities. This devastating condition directly touches the lives of as many as 10 million Americans, including not only persons suffering from the disease but their primary caregivers and other family members as well. At present the course of AD cannot be halted or reversed, and no cure is known. The problem, then, is how to most effectively respond to the psychosocial needs of primary caregivers in order to help them provide the best possible care for a loved one with AD.

When family members no longer have the capacity to meet Alzheimer's Disease (AD) caregiving demands at home, a move to a nursing home or other formal care facility becomes the only solution. Recognizing this as a time of transition, three research questions were identified: (1) What do family caregivers to AD individuals experience as they shift their caregiving from home to formal care settings? (2) How does caregiving in formal care differ from caregiving at home? and (3) How do family caregivers perceive the relationships that develop between families and formal care staff? Specific attention was paid to the experiences of spouses and adult children. Using a qualitative approach, two specific bodies of data were investigated. First, transcripts of a series of 30 focus groups with 179 caregivers, and second, ten follow-up interviews were analyzed. Both spouses and adult children overwhelmingly identified physical exhaustion and often emotional exhaustion as the pervasive common experience. After reaching this state, caregivers identified the pivotal nature of events in contributing to placement. These kinds of events turn out to be more like turning points than crises. Caregivers in this study identified five themes that were influential in their decision-making process. In order of their importance to the caregivers, they were: events, the health care system, caregiver-care receiver relationship, support, and options and availability. A male spouse caregiver was likely to cite a turning point event centered on an incontinence problem, while for a female spouse caregiver, it was an AD safety issue. The health care system was usually a negative influence and served to delay the placement decision. Immediately, after placement, family caregivers noted shifts in control, involvement and personal reorganization. Family caregivers frequently noted the development of a caregiving relationship with staff. The individuals whom the family caregivers mentioned most often were the aides. Their bottom line was that staff deliver quality care, which they equated with caring about the resident rather than only taking care of them. The findings from this study have implications for theory development, family caregivers, formal care staff, and health care policy.

Indiana University-Purdue University Indianapolis (IUPUI) / VIGILANCE EXPERIENCES: CANCER PATIENTS, FAMILIES, AND NURSES Cancer disease, treatment, and errors in health care put patients at increased risk for poor outcomes. To improve outcomes and protect patients, researchers recommend increased vigilance; yet, research on vigilance in health care is minimal. There are even fewer studies on patients, family members, and nurses’ experiences of vigilance, although such studies could contribute to understanding mechanisms that foster vigilance within and across groups. The purpose of this study was twofold: Aim 1 was to describe the experiences of vigilance as perceived at the individual levels of patients receiving treatment for cancer, family members of a patient with cancer, and oncology nurses. Aim 2 was to evaluate commonalities in the lived experience of vigilance as described by patients receiving treatment for cancer, one of their family members, and a nurse caring for them. A qualitative, empirical phenomenological method guided this research. The sample consisted of 7 cancer patients, 6 family members of cancer patients, and 7 oncology nurses. Broad, data generating questions were constructed to elicit rich, narrative descriptions of participants’ experiences with vigilance, which were audio-taped and transcribed. Each participant group data were individually analyzed, using Colaizzi’s method. Significant statements from each participant were identified, restated in the language of science, and interpreted for formulated meanings. From formulated meanings, theme categories were constructed and merged across participants within the groups. A narrative of the commonalities of the experience within each group was developed. The across group commonalities were analyzed in a matrix. A total of 5,272 total significant statements were derived from three participant groups. Eleven themes were derived from patient data, ten from family member data, and ten from nurses’ data. Vigilance appeared as a complex, multidimensional phenomenon, which is implicitly shared within and across these three groups. Common vigilance themes found across all 3 groups included: identification of threats, the key importance of knowledge, trust, hope and connectedness, the beyond the call of duty nature of vigilance, ways vigilance takes energy and effort, what promotes and interferes with vigilance, and vigilance as a shared phenomenon. Implications were found for the healthcare system and nursing care.