Person-centred web-based support--development through a Swedish multi-case study.

BACKGROUND: Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons' needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care. METHODS/DESIGN: The research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described. DISCUSSION: To allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people's experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.

From multidimensional support to decreasing visibility: a field study on care culture in paediatric and adult diabetes outpatient clinics.

BACKGROUND: As the incidence of Type 1 diabetes mellitus has increased during childhood, more patients will experience the transfer from paediatric diabetes care to adult diabetes care. In order to achieve a coherent care system it is essential to identify conditions, events and actions that hinder and facilitate a successful transition between these settings. OBJECTIVES: The aim of this study was to describe care culture in paediatric and adult diabetes outpatient clinics and implications for care of adolescents in those settings. METHODS: Fifty-one participant observations and 10 semi-structured interviews with diabetes care providers were carried out in two paediatric clinics and two adult clinics in Sweden. Data were analysed simultaneously with data collection, using a constant comparative method developed in the grounded theory tradition. RESULTS: In the analysis process, one core category, four categories and subcategories were generated. The core category shifting aspects of diabetes care culture is related to the categories. The categories support of self-management and unfocused behaviour describes mostly similar strategies and attitudes in paediatric and adult diabetes care, while multidimensional support and decreasing visibility describes differences in characteristics of care culture in paediatric versus adult diabetes care. CONCLUSIONS: The decreased visibility might have consequences for vulnerable patients, such as those with insufficient metabolic control and self-management abilities. By illuminating shifting aspects of care culture, care providers can be given a basis for reflection and discussion of how the care is provided in their own setting and how different environmental conditions and care strategies can promote formal and informal contacts between patients and care providers.

Handling the transition of adolescents with diabetes: participant observations and interviews with care providers in paediatric and adult diabetes outpatient clinics.

PURPOSE: The purpose of this study was to explore how care providers handle the transition process from paediatric to adult diabetes outpatient clinic and to describe their perception of adolescents' needs during this process. METHODS: Participant observations of patient visits to nurses and physicians and 10 semi-structured interviews with care providers in two paediatric and two adult clinics in Sweden were carried out. Data were analysed using the constant comparative method developed in the grounded theory tradition. RESULTS: The integrated framework developed in the analysis consists of subcategories, process categories and a core phenomenon. The preparation phase showed in this study that preparing transition requires modified strategies. The transition phase implied transferring responsibility and changing care relations while the evaluation phase revealed that care providers are creating mutual understanding through appraisal. All categories are related to the generated core phenomenon: enabling integration through professional meetings. The way care providers construct meeting arenas has a crucial impact on the possibility to bridge uncertainty, insufficient knowledge, routines and strategies. CONCLUSIONS: The way participating clinics handle transition greatly influences the process. Professional meetings appeared to be of vital importance to enable the building of bridges between paediatric and adult diabetes care in this study.