This exploratory research utilized a qualitative focus group of seven participants to see what insights older lesbian women provide toward impacting understanding of their perceived isolation, perceived invisibility, health needs and access to social services that are congruent with LGBTQ+ culture. The participants were recruited through snowball sampling. After the completion of the data collection, data were thematically analyzed and color coded. The significance of this study was to gain greater insight into the specific needs and areas of concerns of a vulnerable population. This greater insight may lead to social workers’ being able to provide better services for lesbian women. The major themes derived from the data were separated by access, homophobia, invisibility, social support, and health. Sub-themes included: quality of healthcare, support system, community involvement, political climate, coming out, need for LGBTQ+ specific services, discrimination (sexism/homophobia), finances, relationship status, health issues and social limitations, quality of life, planning, invisibility.

To date, the most common pharmacological treatments for dementia are cholinesterase inhibitors and N-methyl-D-aspartate receptor antagonists (antidementia medications), which are associated with a delay in the progression of the cognitive and functional symptoms. Studies of the effects of antidementia medications on neuropsychological symptoms (NPS) show varying results. Presence of NPS can also affect the amount of time caregivers spend with persons with dementia, which can affect informal costs of the condition. This project used extant data from the longitudinal, population-based Cache County Study on Memory and Aging (CCSMA) and the Dementia Progression Study (DPS), which included permanent residents aged ≥ 65 of Cache County, Utah. Linear mixed models were used to assess the association between antidementia medications with informal costs and NPS. The first study examined whether antidementia medications were associated with a decrease in informal costs. Use of antidementia medications was not significantly associated with informal costs (expβ = .79, p = .090). When restricting the sample to only the participants who were of mild dementia severity at baseline, antidementia medications were associated with a 28% decrease in informal costs (expβ = .72, p = .039). The second study evaluated whether antidementia medications were associated with a decrease in NPS. Results indicated that use of antidementia medications was associated with a 28% increase in NPS (expβ = 1.28, p < .001). However, this association was no longer significant with the inclusion of covariates, in particular, the use of psychotropic medications. Use of any psychotropic medication was significantly associated with a 30% increase in Neuropsychiatric Inventory (NPI) score. Overall, the use of antidementia medications may not significantly reduce informal costs or NPS. The use of antidementia medications may reflect patterns of use that are prompted by severity of dementia and NPS.

Alzheimer's disease and other forms of dementia cause cognitive disabilities in the afflicted person. As a result, the person with dementia often requires assistance from a primary caregiver. However, while the caregiver is away from the home they are unaware of the person's status and may not be able to find out without returning to the home due to dementia's effects on cognition. In this thesis work, a system of embedded devices is presented which tracks a solitary dementia patient in the home in real-time. The system is composed of three main hardware components. Multiple passive and active sensors are strategically placed to monitor the patient. A number of custom battery-powered embedded systems read the sensors and wirelessly transmit the sensor's values. A central computational node collects the wireless transmissions and analyzes the data. Two algorithms were developed that detect the patient's eating activities and location throughout the home from the sensor data. A web-based user interface was designed that allows a primary caregiver to remotely view the patient's status while away from the home. Numerous trials are performed which test the system's ability to monitor the patient's eating activities and location. The positive results of the trials show that the proposed system is able to detect eating patterns as defined by rules and localize in real-time the patient in the home, accurate to a single quadrant of a room. The proposed embedded system is highly affordable and has two novel features, namely eating detection and patient localization accurate to a single quadrant of any room in the home. Both features use sensors installed in the home and do not require the patient to wear any sensors on their person. The state-of-the-art products currently available are able to localize only to a single room without the patient wearing sensors.

This dissertation examines end-of-life experiences at a small Zen hospice in the Pacific Northwest region of the United States. Through an exploration of how end-of-life communication, sense-making, decision-making, and care in this setting differ from that of typical clinical settings, this project highlights and interrogates the experiences of dying as spiritually, rhetorically, narratively, relationally, and communally bound events. Keywords: Zen hospice, end of life, narrative sensemaking, medical-ethical decision making, spirituality, healing rhetoric, communities of practice

The purpose of this study is to examine how various characters are portrayed within the self-narratives of women who are employed to care for adults with disabilities. This research looks at how these women's personal narratives construct characters-their clients (the individuals they provide services for), clients' guardians, and how these women portray themselves as caregivers. Interviews were conducted with eight women who provide paid care services to physically and/or cognitively impaired adults who receive services through the Florida Developmental Disabilities Home and Community Based Services Waiver Program. This program endorses specific expectations about the nature and purpose of caregiving. According to their stories, clients were perceived as diverse and in control; relationships with parents and legal guardians were described in terms of helpful and challenging qualities; and, "good" caregivers were perceived as maintaining client choice, and were expected to know their clients. Given the disparate narratives of care that exist in the Waiver, the work these study participants do requires careful balancing of often contradictory expectations. Their accounts indicate how at the ground level, these narratives of care become "muddled" as caregivers interact with clients and other significant individuals.

Families who are dissatisfied with the nursing home care of their family member may supplement their care by hiring a private companion. Families who have the financial resources pay for extra care, while families who cannot afford a private companion receive the current standard of care. Anecdotal evidence suggests that private companion use has increased over time. However, there is no research that examines private companions. The goal of this mixed methods study was to provide empirical evidence about who private companions are, what they do, and why they are needed. Andersen and Newman’s Health Service Utilization Model was used to understand private companion use. This study used both survey research and grounded theory. A mailed survey was completed by 280 of 432 family members of nursing home residents in a Toronto nursing home, yielding a response rate of 65 percent. Grounded theory principles were used to conduct interviews with 10 family members to understand why private companions were hired. Almost two-thirds of nursing home residents had a private companion. Family members reported that they paid about $475 per week for private companions who provided about 40 hours of care per week. Private companions were mostly women and immigrants. Private companions performed many activities including assisting with activities of daily living, toileting, feeding, escorting to activities, and providing social support. In the survey, family members reported hiring a private companion for reasons related to families’ needs (e.g. quality of care concerns), residents’ needs (e.g. deteriorating health); and staff recommendations. The family members reiterated these reasons in the interviews. Quality of care was the overarching theme that captured the reason for private companion use, which encompassed the following themes: inadequate staffing, unmet residents’ needs, overburdened family members, and suboptimal nursing home environment. The qualitative data emphasized the importance of building relationships with nursing home residents. The predictors of private companion use in the multivariate analysis were longer duration of nursing home stay, higher resident dependency, and family members’ concerns with quality of care. This research is among the first to study private companions, and has implications for research, policy, and practice.

Families who are dissatisfied with the nursing home care of their family member may supplement their care by hiring a private companion. Families who have the financial resources pay for extra care, while families who cannot afford a private companion receive the current standard of care. Anecdotal evidence suggests that private companion use has increased over time. However, there is no research that examines private companions. The goal of this mixed methods study was to provide empirical evidence about who private companions are, what they do, and why they are needed. Andersen and Newman’s Health Service Utilization Model was used to understand private companion use. This study used both survey research and grounded theory. A mailed survey was completed by 280 of 432 family members of nursing home residents in a Toronto nursing home, yielding a response rate of 65 percent. Grounded theory principles were used to conduct interviews with 10 family members to understand why private companions were hired. Almost two-thirds of nursing home residents had a private companion. Family members reported that they paid about $475 per week for private companions who provided about 40 hours of care per week. Private companions were mostly women and immigrants. Private companions performed many activities including assisting with activities of daily living, toileting, feeding, escorting to activities, and providing social support. In the survey, family members reported hiring a private companion for reasons related to families’ needs (e.g. quality of care concerns), residents’ needs (e.g. deteriorating health); and staff recommendations. The family members reiterated these reasons in the interviews. Quality of care was the overarching theme that captured the reason for private companion use, which encompassed the following themes: inadequate staffing, unmet residents’ needs, overburdened family members, and suboptimal nursing home environment. The qualitative data emphasized the importance of building relationships with nursing home residents. The predictors of private companion use in the multivariate analysis were longer duration of nursing home stay, higher resident dependency, and family members’ concerns with quality of care. This research is among the first to study private companions, and has implications for research, policy, and practice.

ABSTRACT This qualitative study utilized a systems theory approach and followed the premise that families are systems that seek a balanced state, interact with their environment, and are goal directed to explore the impact of anaphylaxis on families from a parental perspective. The purpose of this study was to explore the role of family leisure in families while living with a child diagnosed with anaphylaxis. This was done by exploring parental meanings and experiences of living with anaphylaxis and how this impacted their family leisure. Five research questions guided the inquiry relating to experiences and meanings of anaphylaxis, experiences and participation in family leisure, valuations and meanings of family leisure, caregiving as a constraint to family leisure, and gender considerations. A local support group for families and individuals living with anaphylaxis (WRASE) was contacted and aided in identifying parents who would be interested in participating in this study. Specific attention was given to obtaining a sample that included different allergies, ages of children, and number of children in the household. Four families were selected and both parents were interviewed separately in all but one case. Four core themes emerged from the in-depth interviews and included An Emotional Journey, Seeking Community Support and Dealing with Negative Feedback, Impact on Family Leisure, and The Increased Domestic Workload and Changing Role of Mother. In essence, parents experienced intense feelings of fear, paranoia, and stress as they sought to manage their child’s allergy and these feelings were just as intense during their family leisure time. Role changes and strain were particularly severe for the mothers in this study. The parents of children with anaphylaxis have received little attention in social science research to date. This research adds to the literature on chronic illness and also offers new insight into how anaphylaxis affects family leisure. Key findings in this area were the lack of opportunities for travel and social isolation. Furthermore, it was found that leisure, although often thought to be beneficial in managing stress and improving family functioning, may not be available to those living with anaphylaxis.

ABSTRACT This qualitative study utilized a systems theory approach and followed the premise that families are systems that seek a balanced state, interact with their environment, and are goal directed to explore the impact of anaphylaxis on families from a parental perspective. The purpose of this study was to explore the role of family leisure in families while living with a child diagnosed with anaphylaxis. This was done by exploring parental meanings and experiences of living with anaphylaxis and how this impacted their family leisure. Five research questions guided the inquiry relating to experiences and meanings of anaphylaxis, experiences and participation in family leisure, valuations and meanings of family leisure, caregiving as a constraint to family leisure, and gender considerations. A local support group for families and individuals living with anaphylaxis (WRASE) was contacted and aided in identifying parents who would be interested in participating in this study. Specific attention was given to obtaining a sample that included different allergies, ages of children, and number of children in the household. Four families were selected and both parents were interviewed separately in all but one case. Four core themes emerged from the in-depth interviews and included An Emotional Journey, Seeking Community Support and Dealing with Negative Feedback, Impact on Family Leisure, and The Increased Domestic Workload and Changing Role of Mother. In essence, parents experienced intense feelings of fear, paranoia, and stress as they sought to manage their child’s allergy and these feelings were just as intense during their family leisure time. Role changes and strain were particularly severe for the mothers in this study. The parents of children with anaphylaxis have received little attention in social science research to date. This research adds to the literature on chronic illness and also offers new insight into how anaphylaxis affects family leisure. Key findings in this area were the lack of opportunities for travel and social isolation. Furthermore, it was found that leisure, although often thought to be beneficial in managing stress and improving family functioning, may not be available to those living with anaphylaxis.

An improved understanding of the costs of diseases is obtained by conducting a case study of the costs associated with end stage renal disease (ESRD). In estimating the costs of ESRD, the costs incurred by both patients and their primary unpaid caregivers are calculated. Most economic studies of the costs of diseases ignore either the patients’ or unpaid caregiver side, focusing on one or the other. From a theoretical standpoint, it is shown unpaid caregiving lowers the costs of diseases to society. Unpaid caregiver lowers the cost, because for unpaid caregiving to occur, the net benefits of unpaid caregiving must be lower than the net benefits of hiring a paid caregiver. Using patients and their primary caregivers at the Gambro Dialysis Center in College Station, Texas as a case study, estimated total ESRD costs range from $84,000 to $121,000 / year / case. The distribution of these costs is positively skewed. Of the total costs, approximately 2% to 25% can be attributed to unpaid caregiving. Excluding direct medical costs in total ESRD costs, unpaid caregiving is 14% to 65% of total ESRD costs. Consideration of unpaid caregiving costs is, therefore, an important component of the costs of diseases. These estimates are conservative as the costs associated with lifestyle changes and health effects are noted, but no monetary value is placed on them. Results also indicate the patients’ and caregivers’ perception of the quantity of caregiving varies. An alternative water supply system to improve the efficiency of water supply systems taking into account water pricing, marketing, and treatment costs is proposed. This system treats and supplies water differently depending on the source of the water and if the end-use of the water is a potable or non-potable use, then may reduce treatment costs. Decreased treatment costs may make more stringent water standards more affordable. More stringent water standards may cause a decrease in the risk of water-related diseases including ESRD induced by water-borne toxins. Reducing the risk of ESRD will reduce society’s costs associated with chronic illnesses. Possible benefits and costs of the proposed system are discussed, but not calculated.