نبذة مختصرة : Background: Persons living with long-term conditions and informal caregivers are often dependent on support for their self-care and informal care. The experience of insufficient support may lead some to develop health innovations to address their unmet health needs (i.e., patient-driven innovations). Although research on patient-driven innovations is increasing, knowledge about the needs that such innovations address, how and by whom they are used, and their outcomes is still limited. Empirical studies are needed to understand the potential benefits and challenges of patient-driven innovations for self-care, informal care, as well as health service delivery. Further, the role of patient innovators in health services research merits investigation. Aim: The overall aim of this thesis was to explore which supportive resources matter to persons living with long-term conditions and informal caregivers and how patient-driven innovations can help facilitate self-care and informal care. The aim was addressed by exploring patient-driven innovations in different contexts. Study I explored the use of a caregiver-developed social network-mapping tool (CareMaps) to assess quality of social and healthcare relations. Study II explored how such relations could be used as supportive resources for self-care and informal care. Study III explored the objectives and outcomes of patient-driven innovations that have been published in peer-reviewed journals. Study IV explored patient innovators’ reasons for and experiences of authoring scientific publications about their innovations. Methods: Four qualitative studies were conducted. Studies I and II were conducted in the context of brain tumor self-care and informal care in Sweden. Study I was an interview study with persons living with brain tumors, informal caregivers, and bereaved caregivers, and collected data were analyzed using thematic analysis. Study II was an interview study with informal caregivers of persons living with brain tumors, and collected data were analyzed using a ...
Relation: I. Dahlberg M, Bylund A, Gustavsson P, Herlestam Calero T, Wannheden C. What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations. Social Science and Medicine. 2022;292:114575-114575. ::doi::10.1016/j.socscimed.2021.114575 ::pmid::34814025 ::isi::000724208400007; II. Dahlberg M, Wannheden C, Andersson S, Bylund A. “Try to keep things going” – Use of various resources to balance between caregiving and other aspects of life: an interview study with informal caregivers of persons living with brain tumors. [Manuscript]; III. Dahlberg M, Lek M, Malmqvist Castillo M, Bylund A, Hasson H, Riggare S, Reinius M, Wannheden C. Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review. BMJ Open. 2023;13:e071363. ::doi::10.1136/bmjopen-2022-071363 ::pmid::37263703 ::isi::001184391200063; IV. Dahlberg M, Luckhaus J.L, Hasson H, Jansson H, Lek M, Savage C, Riggare S, Wannheden C. Why publish? An interview study exploring patient innovators’ reasons for and experiences of scientific publishing. [Submitted]; http://hdl.handle.net/10616/49043
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