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Although in the past 50 years significant advances based on research of brain-computer interface (BCI) technology have occurred, there is a scarcity of BCI assistive technology devices at the consumer level. This multiple case study explored user-centered clinical BCI device design strategies used by computer scientists designing BCI assistive technologies to meet patient-centered outcomes. The population for the study encompassed computer scientists experienced with clinical BCI assistive technology design located in the midwestern, northeastern, and southern regions of the United States, as well as western Europe. The multi-motive information systems continuance model was the conceptual framework for the study. Interview data were collected from 7 computer scientists and 28 archival documents. Guided by the concepts of user-centered design and patient-centered outcomes, thematic analysis was used to identify codes and themes related to computer science and the design of BCI assistive technology devices. Notable themes included customization of clinical BCI devices, consideration of patient/caregiver interaction, collective data management, and evolving technology. Implications for social change based on the findings from this research include focus on meeting individualized patient-centered outcomes; enhancing collaboration between researchers, caregivers, and patients in BCI device development; and reducing the possibility of abandonment or disuse of clinical BCI assistive technology devices.

The number of elderly in the U.S. (i.e., individuals age 65 years or older) is growing at a rapid rate. While the current proportion of elderly persons living in U.S. is estimated to be little over 14%, it will soon reach up to 20% in next 10 years. In addition, it is anticipated that the elderly population will soon outnumber the younger generations, for the first time in U.S. history. With the rapid shift we are witnessing in the U.S. population, the World Health Organization (WHO) informs that the leading cause of death in U.S. has also shifted: from infections to chronic illnesses. The majority of elderly individuals will suffer from at least one chronic illness, and many will live longer than ever, with complex multiple healthcare needs. The demands for specialized end of life (EoL) care among frail elderly will continue to rise, and it is among the top research priorities to identify best practices in EoL care and understand how best to facilitate patient-centered care in healthcare settings. In order to increase awareness in the importance of quality care provided to those who are near EoL, the Institute of Medicine (IOM; now the National Academy of Medicine) recommended a nation-wide implementation of an advance care planning tool, the POLST (Physician Orders for Life-Sustaining Treatment). Designed specifically for frail individuals living with serious illnesses, the POLST program is used to elicit care preferences and deliver goal-concordant care. Making patients’ specific care wishes actionable and transferrable, it aims to preserve one’s autonomy, and to allow them to die with dignity. This dissertation aims to evaluate the POLST program, from its effectiveness, dissemination, to outcomes associated with its maturity status. The first chapter provides background information on the aging population the importance of advance care planning among frail elderly persons. The POLST program is introduced and I lay out the three research aims and the significance of each topic. Chapter 2 contains a systematic review of scientific evidence on the concordance between documented care wishes and actual care delivered to the POLST users. It explains specific care interventions that yielded high concordant care, as well as ones that had mixed results. In chapter 3, an environmental scan of a state-specific POLST program across all U.S. states and Washington D.C. is presented; the scan examined maturity status, specific care options mentioned/ absent as well as descriptive statistics on the association between presence of infection/pain-related care options and the POLST program maturity status. In chapter 4, a quantitative analysis aimed at examining the impacts of the POLST program maturity status on a patient-level outcome (i.e., nursing home death) is presented. In it, multiple large datasets were used to generate a representative sample of the U.S. nursing home population. I then applied multivariate logistic regression modeling to estimate associations. Lastly, chapter 5 synthesizes the findings of this dissertation as well as strengths and limitations. It then shares recommendations for policy, clinical practice and future research.

Bakgrund: Det är viktigt att det finns kunskap om palliativ vård inom alla verksamheter då patienter i palliativ vård finns överallt inom vården. Finns inte kunskapen kan patientens behov lätt missas. Författarna till den här studien ville få en förståelse för vilka omvårdnadsbehov sjuksköterskor upplever att patienten har i det palliativa skedet. Syfte: Syftet var att undersöka vilka omvårdnadsbehov sjuksköterskor upplever att patienten har i det palliativa skedet och hur dessa behov kan tillgodoses. Metod: En kvalitativ intervjustudie genomfördes på ett sjukhus. Sju sjuksköterskor intervjuades och intervjumaterialet analyserades med manifest innehållsanalys. Resultat: Resultatet visade att sjuksköterskorna upplevde att patienten i palliativ vård har två övergripande omvårdnadsbehov. Dessa är psykosociala behov och omvårdnadsbehov. I psykosociala behov ingår autonomi, behov av uppmärksamhet, kommunikation och socialt nätverk. I omvårdnadsbehov ingår förutom behovet av omvårdnad även behov av omvårdnadskompetent personal. Konklusion: Studien visade att sjuksköterskorna upplevde att patienten i det palliativa skedet har behov av symptomlindring, samtal, bevarad autonomi, att bli behandlad som en individ, att ha ett stödjande socialt nätverk och kompetent personal.

SAMMANFATTNING Begrepp som patientcentrerad vård och helhetssyn i vården verkar användas av olika yrkeskategorier, inom hälso- och sjukvård, vilket kan ur kvalitetssynpunkt kan resultera i oklarheter inom den kliniska verksamheten. Syfte: Syftet med studien var att ta reda på vilka likheter och skillnader begreppen patientcentrerad vård och helhetssyn i vården har i den vetenskapliga litteraturen. Begreppen söktes i databaserna CINAHL och PubMed. Metod: Den metod som används för att jämföra begreppen byggde på Segestens begreppsanalysmodell. Resultat: Det som främst skiljer begreppet helhetssyn i vården från patientcentrerad vård är den andliga dimensionens centrala roll. Resultatet visar även att ett patientcentrerat arbetssätt förbättrar ekonomiska resultat. Det är främst sjuksköterskor som använder sig av helhetssyn i vården. Patientcentrerad vård verkar användas främst av läkare men begreppet förekommer även bland sjuksköterskor. Det gemensamma för begreppen då det gäller karaktäristika, förutsättningar och konsekvenser, är det som definieras i kraven på god vård enligt hälso- och sjukvårdslagen. Slutsats: sjukvårdspersonalens arbetssätt och syn på patienten utifrån patientcentrerad vård och helhetssyn i vården värnar om patientens bästa. Det som skiljer begreppen kan bero på vilken yrkesgrupp som undersökts i respektive studie. Studier av begreppet patientcentrerad vård uppfattas vara mer genomförda på läkargruppen samtidigt som helhetssyn i vården tycks vara mer förekommande då det gäller sjuksköterskegruppen. Fler studier behövs för att identifiera användningen av dessa begrepp och om deras betydelse i den kliniska verksamheten. / SUMMARY Concepts such as patient-centered care and holistic care seem to be used by different professions in healthcare. Looking upon these concepts from the aspect of quality, ambiguities can arise in clinical practice. Objective: The purpose of this study was to compare the similarities and differences between the concepts of patientcentered care and holistic care as they are presented in scientific literature. The terms were searched for in the databases CINAHL and PubMed. Method: The method used to compare the concepts was based on Segesten concept analysis model. Results: what differentiates the concept of holistic care of the patient-centered care is the central role of spiritual dimension. The results also show that a patient-centered care improves economic results. The term holistic health care seems to be used primarily by nurses, while patient-centered care seems to be used primarly by physicians, even though the term does occur among nurses. Conclusion: both patient-centered care and holistic care seem to have the same goal, that of preserving the patient`s best interests. What distinguishes the concepts may depend on the profession which was examined in each study. Research studies on patient-centered care have been carried out primarily on physicians, while studies on the holistic approach in health care have focused on nurses. More studies are needed to identify the use of these concepts and their importance in clinical practice. Nyckelord: Patient-centeredness, patient-centered care, holistic care, holistic nursing.

Diabetes mellitus is a significant problem in the United States with the burden being greater in the African American population. Because diabetes is complex and costly, the importance of self-care management changes the disease management paradigm from “provider-centered” to patient-centered”. Empowerment is a possible solution for barriers to better diabetes management. Patient empowerment is helping patients discover and develop the inherent capacity to be responsible for their own life. Although patient empowerment is a valuable philosophy, there are gaps between the philosophy and actual practice. There are limited studies addressing the effectiveness of patient empowerment at improving diabetes management. Therefore, this study examined the association of patient empowerment and diabetes management by gender, age, socioeconomic status and education level by using the data from the Patient Empowerment to Improve Diabetes Care intervention conducted in the Diabetes Clinic of the Grady Health System (GHS). In this study, diabetes management was measured by glycated hemoglobin (HbA1c) level which shows the average blood glucose level over the past two to three months. Patient empowerment was measured by two standardized tools which were the Diabetes Empowerment Scale-Short Form and Patient Activation Measure. In this study, patient empowerment scores measured by these tools were not associated with HbA1c level in African American diabetes patients of the Diabetes Clinic of the GHS. Further study is necessary to understand the association between patient empowerment and diabetes disease management by using different measures of patient empowerment, different levels of disease management, and measurement in different settings.

Cancer is the leading cause of death in Taiwan. Breast cancer has the highest morbidity rate in females. Early detection in Taiwanese women is hampered by their inadequate knowledge of risk factors, their biased perceptions of mammography and by their low intentions to carry out recommended preventative strategies. Although the Internet has become a powerful tool to disseminate health information, health information offered on the web frequently is not theoretically-based or patient-centered. Effken's (2003) Informatics Research Organizing Model (IROM) and the Transtheoretical Model (TTM) (Prochaska & Diclemente, 1982; Rakowski, Dube, & Goldstein, 1996) were used to guide the design and evaluation of a tailored web-based program aimed at improving effective breast cancer detection in Taiwanese women. This study used a pretest-posttest design to examine the impact of a tailored, web-based educational intervention on Taiwanese women's perceptions of and intentions to obtain mammography, as well as their satisfaction with the website. One hundred twenty eight Taiwanese women were randomly assigned to one of two groups: tailored intervention (TI) or standard intervention (SI). The TI group received tailored educational materials (i.e. tailored messages, case studies, personal testimonies, and mammography information). The SI group received an educational brochure developed by the Bureau of Health Promotion, Department of Health (DOH). A Stage of Adoption of Mammography Question (SAMQ) and Decisional Balance of Mammography Inventory (DBMI) were administered before and after the educational intervention. A Website Users Satisfaction (WUS) and Demographics Inventory (DI) were administered after the intervention. All materials and instruments were delivered and assessed via a website. ANCOVAs, Chi-Square tests and t-tests were utilized to test the hypotheses. Results of the study revealed that the TI group differed significantly from the SI group in terms of perceptions of, and intentions to obtain, mammography, as well as in satisfaction with the website. The results of this study contribute to our knowledge of how a health education website can change women's mammography-related perceptions and intentions if theoretically-based and tailored interventions are emphasized.

The complexity and lack of coordination of the U.S. health care system is especially challenging for older adults, many of whom have multiple chronic conditions. The faith community is a potential partner to assist them, due to strong religiosity of older adults and specific characteristics of faith communities. This study explores the knowledge and practices of faith community nurses (FCNs) in meeting care coordination needs of older adults and identifies a model of gap-filling by FCN practice. An approach combining both quantitative and qualitative approaches was used. A survey was distributed to all known FCNs in Kentucky. From the 60 respondents, 15 FCNs were selected for personal interviews, and six care recipients were also interviewed. Survey data revealed a relatively older workforce, M=57 years, with 73% in nursing for more than 20 years. All served as FCNs in their own congregations, mostly as volunteers. FCNs relied on informal rather than formal assessments, with little consistency in type of health-related information obtained from congregants. The combined interview data revealed themes including, strong grounding in faith, sense of congregational family, reliance on general nursing assessment skills, intentional empowerment, bridging expanses, trust, and continuity. Findings suggest that FCNs in Kentucky identify and fill significant gaps in health care for older adults. Spirituality and religious rituals were important for FCNs and those they served. Congregants sought out FCNs to answer questions, interpret medical information, and assist with health care interactions. The stability of the FCNs in the lives of congregations was regarded as important; congregants counted on FCNs presence through transitions in health. A model to explain FCN intervention was developed based on integration of a social ecological perspective with the WHO International Classification of Functioning, Disability, and Health. This model reflects contextual factors that occur throughout nested environments that surround each individual, including immediate family, congregational family, health and social care systems, and societal policies. FCNs serve as a bridge between and among these nested environments, connecting them and facilitating change within each level.

Online Health Seeking (OHS) is widespread and widely studied, but its ideal fit in healthcare is still unclear. OHS is seemingly emblematic of patient self-interest and control and is an intuitive fit with the tenets of patient-centered care (PCC). Researchers have made only a few attempts to evidence or leverage this connection, focusing instead on describing the figures and typical characteristics of OHS. Finding, consuming and sharing online health and wellness information is one of the common online activities, and consumers are generally satisfied with their results despite using simple and error-prone search strategies. Physicians are interested in their patients' OHS, but for a variety of constraints including time, compensation and traditional roles in medicine, most patient OHS goes unshared with doctors. Healthcare facilitators, a relatively new class of health professional that works to bridge the gap between their client's health and personal life, may be an ideal partner for patients in OHS. In this dissertation I share my investigation of the OHS-PCC connection, presenting a case study of a type of healthcare facilitator that has embraced OHS. By studying OHS, I was also able to contribute to the collaborative information seeking (CIS) community. CIS theory and social search tools have pointed to social factors that can influence the entire process of information seeking. In this dissertation I argue that nearly any social search design can be seen as situated or embedded in a unique socio-environmental context. I suggest that social search tools can be used as probes to understand the environment, and that interactions with a search tool can illustrate phenomena far beyond direct search motivations and goals. I also hypothesize that social search field studies can produce changes in their environment, producing changes in user relationships outside of the experimental search system. My study of OHS is an opportunity to test these hypotheses by creating a collaborative search tool that seeks to use OHS as a tool to improve patient-provider relationships. In this dissertation I present the results of a series of field studies at a local clinic that centers on a unique form of health facilitator. Drawing on several formative investigations and related work I synthesize design guidelines for a collaborative OHS tool and describe Snack, a collaborative search tool for OHS customized to my field site. I also present results from Snack's field study and an analysis of email messages between advisors and clients at the clinic. My results show that these health facilitators embraced OHS as a tool to guide and connect with their clients, but fell from this practice after a change at their clinic. After analyzing these results I discuss what makes health facilitators good OHS partners and cover implications for future OHS-based interventions. I also report the positive connections I found between OHS and other quality of care indicators like patient-centered care and the Multidimensional Health Locus of Control. Finally, I consider social search's utility as a probe and intervention in light of my results.