Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers

ABSTRACT The impact of health information on caregivers is of increasing interest to HCI/CSCW in designing systems to support the social and emotional dimensions of managing health. Drawing on an interview study, as well as corroborating data including a multi-year ethnography, we detail the practices of caregivers (particularly parents) in a bone marrow transplant (BMT) center. We examine the interconnections between information and emotion work performed by caregivers through a liminal lens, highlighting the BMT experience as a time of transition and reflection in which caregivers must quickly adapt to the new social world of the hospital and learn to manage a wide range of patient needs. The transition from parent to 'caregiver' is challenging, placing additional emotional burdens on the intensive information work for managing BMT. As a time of reflection, the BMT experience also provides an occasion for generative thinking and alternative approaches to health management. Our study findings call for health systems that reflect a design paradigm focused on 'transforming lives' rather than 'transferring information.' Autho

Disseny i avaluació del web 2.0 "Cuidadoras Crónicos" de suport a cuidadores de persones amb problemes crònics de salut

Introducción: Tener cura de una persona dependiente supone con frecuencia una gran fuente de estrés que puede llegar a afectar, de manera importante a la salud y la calidad de vida de la cuidadora. Cuidar a la cuidadora es un elemento imprescindible para asegurar los cuidados a los pacientes y el mantenimiento de su calidad de vida. Objetivo: Diseñar, implementar y evaluar la efectividad de un programa 2.0 de asesoramiento a cuidadoras no profesionales de personas con problemas crónicos de salud. Metodología: Estudio tranversal descriptivo, casi-experimental con medidas repetidas antes y posteriores a la intervención, longitudinal y multicentrico. La investigación se llevó a cabo en tres fases. Se diseñó el web www.cuidadorascronicos.com. La población objeto de estudio fueron las cuidadoras familiares no profesionales de enfermos crónicos. Los cuestionarios utilizados fueron: ad hoc de datos sociodemográficos, sobrecarga de Zarit, apoyo social Duke-Unc-11, salud mental positiva. Se valoró el grado de satisfacción en el uso del web y el análisis de su uso. La relación entre variables cualitativas se realizó con la prueba Khi-cuadrado (χ²) o el estadístico exacto de Fisher y se utilizó la prueba t-Student para determinar la eficacia pre y post intervención. Resultados: Las cuidadoras son mujeres de edad superior a 50 años, utilizan el teléfono móvil, tienen ordenador en casa y acceso en Internet. La web es de acceso libre bajo la licencia Creative Commons y ajustándose a las directrices del código HONcode. Los resultados post intervención reflejan un nivel de sobrecarga moderada, un apoyo social percibido normal con tendencia a la significación estadística en aumentar (p = 0,068) en el momento post intervención y una tendencia en bajar la autonomía (Factor 4) después de la intervención (p = 0,076). La valoración global del web es de 7,9 ± 2,0 (X̄ ± DE) sobre 10. Conclusiones: Los resultados comparativos pre y post intervención, indican que no se observan diferencias estadísticamente significativas. Las TIC permiten abordar nuevos modelos de atención a las enfermedades crónicas y a la atención a la salud de la cuidadora. La evaluación de la efectividad de estos recursos complementarios es escasa siendo necesario aumentar la producción científica de estudios como este, que evalúan la efectividad de los programasIntroduction: Having cared for a dependent person is often a great source of stress that can affect the health and quality of life of the caregiver in an important way. Caring for the caregiver is an essential element to ensure the care of patients and the maintenance of quality of their lives. Objective: To design, implement and evaluate the effectiveness of a 2.0 advisory program for non-professional caregivers of patients with chronic health problems. Methodology: Descriptive, quasi-experimental cross-sectional study with repeated measures before and after the intervention, longitudinal and multicentric. The investigation was carried out in three phases. The web www.cuidadorascronicos.com was designed. The population studied was the non-professional caregivers of patients with chronic health problems. The questionnaires used were: ad hoc sociodemographic data, Zarit overload, Duke-Unc-11 social support, positive mental health. The degree of satisfaction in the use of the web and the analysis of its use was assessed. The relationship between qualitative variables was performed with the Chi-square test (χ²) or Fisher's exact statistic and the t-Student test was used to determine the pre- and post-intervention efficacy. Results: The caregivers were women over 50 years old, whom were using the mobile phone and had a computer at home with access to the Internet. The website is freely accessible under the Creative Commons license and complying with the HONcode code guidelines. The post-intervention results reflect a moderate level of overload, a normal perceived social support with a tendency to increase (p = 0.068) at the post-intervention moment and a tendency to lower autonomy (Factor 4) after the intervention ( p = 0.076). The overall rating of the website is 7.9 ± 2.0 (X̄ ± SD) out of 10. Conclusions: The comparative pre- and post-intervention results indicate that no statistically significant differences are observed. ICTs allow us to address new models of attention to chronic diseases and care of the caregiver's health. The evaluation of the effectiveness of these complementary resources is scarce and it is necessary develop studies like this, which evaluate the effectiveness of the programs used

Designing for Lived Health: Engaging the Sociotechnical Complexity of Care Work

As healthcare is increasingly shaped by everyday interaction with data and technologies, there is a widespread interest in creating information systems that help people actively participate in managing their own health and wellness. To date, personal health technologies are largely designed as large-scale “patient-centered” systems, grounded in a biomedical model of care and clinical processes and/or commercial “self-care” technologies, that seek to facilitate individual behavior change through activities like fitness tracking. Through investigating the lived experience of chronic illness—multiple, messy, and often the site of uncomfortable dependencies—my thesis empirically and theoretically engages the limitations of such popular design narratives to address sociotechnical complexities in personal health management. My findings, drawn from people’s care practices across three distinct field sites, argue for a need to contend with lived health: the ways in which everyday health and wellness activities are connected to wider ecologies of care that include the emotional labor of family and friends, entanglements of data, machineries and bodies, localized networks of resources and expertise, and contested forms of information work. My thesis contributes to the literature of Information and Computer Science in the fields of Human-Computer Interaction and Computer-Supported Cooperative Work by offering an alternative analytical lens for designing health systems that support a wider range of people’s social and emotional needs.PHDInformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttps://deepblue.lib.umich.edu/bitstream/2027.42/146030/1/eskaziu_1.pd

Studying online support communities: Investigating network patterns and characteristics of social support

People’s activities on the internet have expanded from mainly retrieving information to communicating with each other in virtual settings. Thus, research investigating social interactions in online communities is becoming more and more important. However, the multi-faceted approaches of existing studies for the analysis of online communities make it difficult to combine the findings into a comprehensive understanding. This shows the need for holistic investigations of online communities. This thesis provides such a holistic approach by investigating a combination of different aspects of a selected online support community for older people. MOSuC (Model of Online Support Communities), a model describing the key aspects of online support communities was developed based on existing theories of computer-mediated communication (CMC) as well as theoretical perspectives on social support. Five studies were conducted, each addressing one of the different aspects of the case study community: (i) the message content, (ii) the conversations structure, (iii) the social network of related community members, (iv) the roles that online community members take on, and (vi) the taget population’s needs concerning the exchange of social support in online communities. The findings of these individual studies were then combined in context of MOSuC in order to provide a holistic description of the community. As a result, this thesis provides detailed insight into the characteristics of the case study community as well as the interplay and dependencies between different aspects of the community. Based on the integration of multiple studies, the thesis sheds light on two main issues: the characteristics of the individual aspects of the community as well as how these aspects are related to and affect each other. In addition to the findings of the studies, the thesis also contributes MOSuC, which serves both as a theoretical framework of the aspects of online support communities, as well as a practical tool for integrating the individual studies. In addition, the application, modification and integration of multiple methods in this thesis provide a novel methodological way for an integrative analysis of online support communities