Carina Sparud Lundin

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

BackgroundDeparting 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/DesignThe 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.DiscussionTo 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.

Family dynamics when a child becomes chronically ill: Impact of type 1 diabetes onset in children and adolescents

Abstract The overall aim of the study was to explore the process of family dynamics when a child has been diagnosed with type one diabetes mellitus (T1DM). The study sample consisted of family members of 20 children with T1DM aged 3–17 years. Twenty-nine parents and seven siblings participated in nine focus group interviews. Five individual interviews were conducted. Focus group discussions and individual interviews were audiotaped, transcribed, and analyzed using a grounded theory methodology. The findings are outlined in the core category, the child’s sudden loss of health, and in three related categories: preconceptions, psychological reactions, and impact on family relationships. Preconceptions about T1DM played a critical role when trying to grasp and respond to the diagnosis. Most cohabiting mothers reported a psychological reaction of shock, which the separated mothers didn’t. Fathers paid more attention to the siblings and to the lifelong disease. Mothers of older children with T1DM were more concerned about the child’s future than the mothers of the younger children. In terms of family relationships, the psychological bond to a younger child was strengthened by the diagnosis, as manifested by increased control in social situations. Adolescent siblings showed a greater degree of empathy toward the child with T1DM, whereas preadolescents and preschool siblings tended to fall into rivalry with the child with T1DM. To conclude, in a clinical setting, this knowledge could help the diabetes team in supporting the families in their early process of adaption after the diabetes onset.