Family-centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology.

BACKGROUND: Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. METHODS: This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. RESULTS: Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. CONCLUSIONS: In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.

Understanding the impact on intensive care staff workflow due to the introduction of a critical care information system: a mixed methods research methodology.

The Intensive Care Unit (ICU) is a complex and dynamic tertiary care environment that requires health care providers to balance many competing tasks and responsibilities. Inefficient and interruption-driven workflow is believed to increase the likelihood of medical errors and, therefore, present a serious risk to patients in the ICU. The introduction of a Critical Care Information System (CCIS), is purported to result in fewer medical errors and better patient care by streamlining workflow. Little objective research, however, has investigated these assertions. This paper reports on the design of a research methodology to explore the impact of a CCIS on the workflow of Respiratory Therapists, Pediatric Intensivists, Nurses, and Unit Clerks in a Pediatric ICU (PICU) and a General Systems ICU (GSICU) in Northern Canada.

Bad health informatics can kill--is evaluation the answer?

OBJECTIVE: Health care is entering the age of information society. It is evident that the use of modern information and communication technology (ICT) offers tremendous opportunities to improve health care. However, there are also hazards associated with ICT in health care. We want to present an overview of typical hazards associated with ICT in health care, and to discuss how ICT evaluation can be a solution. METHODS: We analyze examples of failures and problems associated with ICT in health care. This collection is also made available on a website. RESULTS AND CONCLUSION: Systematic, continuous evaluation of quality and effects of ICT during the whole life cycle of ICT components seems to be one important approach to detect and prevent possible ICT hazards and failures, supporting a higher quality of patient care. However, empirical studies proving this assumption are needed.

Future directions in evaluation research: people, organizational, and social issues.

OBJECTIVE: To review evaluation literature concerning people, organizational, and social issues and provide recommendations for future research. METHOD: Analyze this research and make recommendations. RESULTS AND CONCLUSIONS: Evaluation research is key in identifying how people, organizational, and social issues - all crucial to system design, development, implementation, and use - interplay with informatics projects. Building on a long history of contributions and using a variety of methods, researchers continue developing evaluation theories and methods while producing significant interesting studies. We recommend that future research: 1) Address concerns of the many individuals involved in or affected by informatics applications. 2) Conduct studies in different type and size sites, and with different scopes of systems and different groups of users. Do multi-site or multi-system comparative studies. 3) Incorporate evaluation into all phases of a project. 4) Study failures, partial successes, and changes in project definition or outcome. 5) Employ evaluation approaches that take account of the shifting nature of health care and project environments, and do formative evaluations. 6) Incorporate people, social, organizational, cultural, and concomitant ethical issues into the mainstream of medical informatics. 7) Diversify research approaches and continue to develop new approaches. 8) Conduct investigations at different levels of analysis. 9) Integrate findings from different applications and contextual settings, different areas of health care, studies in other disciplines, and also work that is not published in traditional research outlets. 10) Develop and test theory to inform both further evaluation research and informatics practice.

Factors influencing the evaluation of telehealth interventions: preliminary results from a qualitative study of evaluation projects in the UK.

We have carried out a qualitative study of factors that influence the evaluation of telehealth. The study concerned six telehealth projects that are being tracked over two years. In the first 12 months of the study we carried out semistructured interviews and made observations of the participants in the projects. Each case study involved 5-15 subjects, many of whom were interviewed several times. The results indicate that important issues affecting telehealth evaluation include developing and maintaining the technology, reorganization of clinical and administrative duties, professional dynamics, and the difficulty of integrating service provision and evaluation. The findings suggest that the evaluation of telehealth interventions is highly complex, and that this complexity is often underestimated in the design and conduct of evaluation studies.

A Review and Framework for Categorizing Current Research and Development in Health Related Geographical Information Systems (GIS) Studies.

OBJECTIVES: The application of GIS in health science has increased over the last decade and new innovative application areas have emerged. This study reviews the literature and builds a framework to provide a conceptual overview of the domain, and to promote strategic planning for further research of GIS in health. METHOD: The framework is based on literature from the library databases Scopus and Web of Science. The articles were identified based on keywords and initially selected for further study based on titles and abstracts. A grounded theory-inspired method was applied to categorize the selected articles in main focus areas. Subsequent frequency analysis was performed on the identified articles in areas of infectious and non-infectious diseases and continent of origin. RESULTS: A total of 865 articles were included. Four conceptual domains within GIS in health sciences comprise the framework: spatial analysis of disease, spatial analysis of health service planning, public health, health technologies and tools. Frequency analysis by disease status and location show that malaria and schistosomiasis are the most commonly analyzed infectious diseases where cancer and asthma are the most frequently analyzed non-infectious diseases. Across categories, articles from North America predominate, and in the category of spatial analysis of diseases an equal number of studies concern Asia. CONCLUSION: Spatial analysis of diseases and health service planning are well-established research areas. The development of future technologies and new application areas for GIS and data-gathering technologies such as GPS, smartphones, remote sensing etc. will be nudging the research in GIS and health.

Patient satisfaction with teledermatology is related to perceived quality of life.

BACKGROUND: There is a lack of good data about patient satisfaction with teledermatology and about its potential interaction with quality-of-life factors. OBJECTIVES: To assess the association between perceived skin-related quality of life and patient satisfaction with a nurse-led teledermatology service. METHODS: In a mobile nurse-led teledermatology clinic located in four inner city general practices in Manchester, the teledermatology service used digital cameras to capture and store images of skin conditions for remote diagnosis by dermatologists. One hundred and twenty-three adult patients, non-urgent dermatology referrals from primary care, completed the Dermatology Life Quality Index (DLQI) and a 15-item patient satisfaction questionnaire. RESULTS: In common with other studies of patient satisfaction, subjects reported highly favourable views of 'hotel' aspects of the service (93%) and found it 'convenient' (86%). However, 40% of patients would have preferred to have had a conventional face-to-face consultation with a dermatologist, and 17% felt unable to speak freely about their condition. Patient satisfaction with the service was related to quality of life. Patients reporting lower quality of life as measured by the DLQI were more likely to prefer a face-to-face encounter with a dermatologist (r = 0.216, P < 0.05), and to evince anxiety about being photographed (r = 0.223, P < 0.05). CONCLUSIONS: Patient acceptance and satisfaction with telemedicine services is complicated by patients' subjective health status. Telehealthcare providers need to recognize that patients with poor quality of life may want and benefit from face-to-face interaction with expert clinicians.