Personcentrerad IKT-tjänst för personer med typ 2-diabetes

Sammanfattning: Background: Diabetes is a chronic disease affecting more and more people and placing increasing demands on health care. The increasing numbers of adults diagnosed with type 2 diabetes are in need of self-management strategies. Learning self-management includes mastering the skills required to complete the complex emotional and physical tasks necessary to manage well-being and to prevent future complications. A technological service developed with the participation of stakeholders may be an alternative way to meet rising needs for self-management. The involvement of various stakeholders enables cooperation, facilitates patient empowerment, and takes into consideration how adults with type 2 diabetes manage their everyday activities.Aim: The overall aim of the licentiate thesis is, by participatory research methods identify self-management support of a future ICT service to facilitate adults with type 2-diabetes.Methods: Two studies were conducted using participatory design (PD) with qualitative methods. Data were collected among recently diagnosed adults and those with longer experience of type 2 diabetes. The adults were recruited from a primary healthcare centre and from a diabetes hospital clinic in Sweden. Study I identified perceived challenges related to self-management among recently diagnosed adults and those with longer experience of type 2 diabetes by using multistage focus groups. Study II reported needs and wishes for an ICT self-management service to facilitate their everyday life and to deal with type 2 diabetes by using a future workshop.Results: Three main challenges were identified; understanding; developing skills and abilities; and mobilizing personal strengths. Both recently diagnosed adults and those with longer experience of diabetes described challenges in understanding the causes of fluctuating blood glucose and in developing and mobilizing skills for choosing healthful food and eating regularly. The recently diagnosed group were more challenged by learning to accept the diagnosis and becoming motivated to change habit while the experienced group were mainly challenged by issues about complications and medications. The adults with type 2 diabetes expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with the three suggestions; Trust in partnerships, Communication and Individualized information. Acceptance of the diagnosis was a prerequisite for managing diabetes successfully. Acceptance of the diagnosis also made the participants accept information, learn about their condition, and understand how to personally manage their everyday lives. Trust in partnership with caregivers and Communication facilitated that acceptance and understanding of the disease.Main findings: The adults with type 2 diabetes stated different needs for support during different phases of the disease. The expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with three other suggestions; Trust in partnerships, Communication, and Individualized information. The participants’ experience of the participatory methodology as a democratic process and their appreciation of mutual learning contributed to these results, which are consistent with the aims of person centred care.Conclusions: Adults with diabetes have different needs for support during different phases of the disease. From a person-centred perspective it would be desirable to meet individual needs for self-management on peoples’ own terms through a technological service that could reach and connect to a large number of people. Healthcare practitioners need to address the knowledge needs of patients with type 2 diabetes and support them in developing self-management skills. Consistent with person-centred care, practitioners should also encourage patients’ abilities to mobilize their own personal strengths to maintain self-management.