Background: Information Communication Technologies (ICT)-mediated support can reduce family caregiver burden and may bridge service gaps caused by time constraints and language or cultural barriers. (Non)-usage behaviour can be explained using Andersen’s Behavioural Model of Health Service Utilization, Venkatesh’s Unified Theory of Use and Acceptance of Technology, Eysenbach’s Law of Attrition, and Wilson’s and Chatman’s Information Behaviour Theories. Purpose: This study aimed to describe and explain (non)-usage behaviour of ehealth services among Chinese caregivers. Method: This two-phase study used a mixed methods design involving 46 Chinese caregivers who cared for a family member with dementia. Usability of the ICT tools designed in the study was tested. Phase I participants (N=28) had access to a bilingual information site and personalized email support from professionals. Phase II participants (N=18) were randomized to use one of three enhanced features. Pre- and post-intervention data were collected, and qualitative interviews were conducted. Results: The Phase I ICT tools supported the core functions without major usability issues. Perceived efforts to use the ICT-mediated services influenced the consent decisions of Phase I caregivers (p=.036). Caregivers initiated service earlier if they had a higher acceptance of the service (p=0.017). Frequent users of email support experienced a decline of perceived burden compared with an escalation of perceived burden by non-users (p=0.023). An older age, greater caregiving competence, and lower English or computer proficiency explained non-usage behaviour. Requirements were identified to enhance the Phase I ICT tools. In Phase II, a test of three enhanced features showed there was no major usability issue. The intervention study found the enhanced features did not influence email use as hypothesized. Qualitative analysis showed usage patterns were explained by caregiver needs, caregiving beliefs, personal capacity, social support, ICT factors, and style of use. Non-users preferred Chinese to English compared with users (p=0.046). Integrating the theories and empirical findings, three concepts were developed to explain (non)-usage behaviour: usage in context, usage paths, and stages of use. Conclusion: Usage and non-usage behaviour can be explained by the service needs in the caregiving context, the use of non-ICT-mediated resources, and the access barriers to Internet use. Use of ICT-based support can be beneficial to caregivers if they do not drop out of the service.

The unprecedented growth of the aging population in Tennessee is a significant demographic trend that highlights the necessity for healthcare policy that tackles end-of-life issues. This study examined the perceived quality of end-of-life healthcare in Tennessee, areas that are in need of improvement, policies that have the potential to influence improvements, and the role of politics in end-of-life healthcare policy. It also assessed the support for end-of-life healthcare policy that would advance quality of care and expand end-of-life choices for Tennesseans, while evaluating the policy-making process that legislators employ. For this study, data were collected using semi-structured, in-depth interviews with an open interview guide. These interviews were conducted in a two-tiered format. Tier 1 included ten leading experts in various areas of end-of-life healthcare and aging in Tennessee. Tier 2 included nine legislators who were members of the health committees of either the Tennessee House of Representatives or the Tennessee Senate. Qualitative data were organized into numerous categories, and an initial phase of open coding was completed. From this phase of coding, emergent themes and focuses were discovered. This was followed by focused coding on all nineteen interviews using coding software to organize subtleties. Findings of the Tier 1 interviews indicated that there are many areas of end-of-life healthcare that need improvement including increased funding, expanded caregiver support, improved doctor-patient communication, and increased use of advance directives. Emergent themes included the influence of money, having difficult conversations, the stigma of death and dying, and supporting the caregiver. Tier 2 findings highlighted the motivations behind voting decisions and the level of awareness legislators have in areas of end-of-life healthcare policy. Both tiers also explored the support and opposition of physician-assisted death. The findings of this dissertation are intended to inform health professionals and state legislators. The data gathered through this exploratory research and the knowledge gained will lead to a greater understanding of end-of-life healthcare in Tennessee, and what needs to be done to improve its quality. This will allow individuals and families faced with end-of-life decisions to navigate the process with expanded options, access, and support.

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2017-10-19T12:02:34Z No. of bitstreams: 1 Regislaine Leoncio Pereira.pdf: 940942 bytes, checksum: 3107b12e70f9958ec6d190d66d75b5a3 (MD5) / Made available in DSpace on 2017-10-19T12:02:34Z (GMT). No. of bitstreams: 1 Regislaine Leoncio Pereira.pdf: 940942 bytes, checksum: 3107b12e70f9958ec6d190d66d75b5a3 (MD5) Previous issue date: 2017-09-26 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / The demographic revolution and the change in the epidemiological profile confront us with an unwanted reality in the aging process. Although old age is not synonymous with illness, many seniors are aging with morbidities that affect their physical and cognitive ability making them dependent on care. In this scenario the figure of the family caregiver or the care professional appears. Researches that has proposed to look at the care done by family members indicates that caregivers often become ill and succumb to the caring process. However, for reasons pursued in this study, the experience is not common to all caregivers, it is possible to find other possibilities of care in caregivers who developed a healthy relationship in this path. This study aims to discuss the issue of care and the elements that may contribute to overcome the difficulties inherent in family care at home. To do so, we rescued the history of a municipal service and interviewed family caregivers who participate in the Caregiver Support Group. The bibliographic survey pertinent to the theme was fundamental to the research. To deepen the research we used the qualitative method which will allow us to observe and understand the different stories of 06 (six) caregivers and their relationship of care to the elderly family. Center for Reference to the Elderly Health (CERESI) in Guarulhos was our scenario of observation and meeting of respondents who answered open questionnaires, semi-structured interviews and life history narratives / A revolução demográfica e a mudança no perfil epidemiológico nos confrontam com uma realidade não desejada no processo de envelhecimento. Embora a velhice não seja sinônimo de doença, muitas pessoas estão envelhecendo com morbidades que afetam sua capacidade física e cognitiva tornando-as dependentes de cuidados. Neste cenário, surge a figura do cuidador familiar ou do profissional do cuidado. Pesquisas que propuseram se debruçar sobre o cuidado realizado por familiar, indicam que não raramente os cuidadores adoecem e sucumbem ao processo de cuidar. Entretanto, por razões perseguidas neste estudo, a experiência não é comum a todos cuidadores, é possível encontrar outras possibilidades de cuidado em cuidadores que desenvolveram uma relação saudável neste percurso. O presente trabalho tem como objetivo discutir a questão do cuidado e os elementos que podem contribuir para a superação das dificuldades inerentes ao cuidado familiar no domicílio. Para tanto, resgatamos a história de um serviço municipal e entrevistamos familiares cuidadores que participam do Grupo de Apoio ao Cuidador. O levantamento bibliográfico pertinente ao tema foi fundamental para a pesquisa. Para aprofunda-la, recorremos ao método qualitativo, que permitirá observar e compreender as diferentes histórias de 06 (seis) cuidadoras e sua relação de cuidado ao idoso familiar. O Centro de Referência à Saúde do Idoso (CERESI) em Guarulhos foi o nosso cenário de observação e de encontro das entrevistadas que responderam a questionários abertos e entrevistas narrativas