Supportive resources for self-care and informal care : uncovering the role of patient-driven innovations

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 combination of conventional and directed content analysis. Study III was a content analysis of scientific publications that were included in a previously published scoping review of patient-driven innovations. Study IV was an interview study with international patient innovators from three continents who had published in scientific journals. Collected data were analyzed using the Framework Method.

Findings: Study I found that persons living with brain tumors, informal caregivers, and bereaved caregivers expressed positive opinions about using the CareMaps tool but raised some questions regarding its design and how best to use it in their self-care and informal care. Self-care supportive relations and identity-preserving relations emerged as two distinct types of relations that participants valued. They were found in different contexts and emphasized contrasting qualities. Study II found that informal caregivers combined various resources both to manage emotional distress related to caregiving and to make space for valued activities and relationships disconnected from caregiving. In Study III, 83 publications covering 21 patient-driven innovations were analyzed. The patient-driven innovations illustrated a diversity of innovative approaches to facilitate daily lives of persons living with long-term conditions and informal caregivers, interactions with peers, and collaborations with healthcare. Few publications reported on outcomes. Most of the innovations have been developed for use on an individual or community level without healthcare involvement. Study IV found that patient innovators engaged in scientific publishing primarily to strengthen the patient voice in research and to gain recognition for their innovations. Although they had positive experiences of research and publication processes, they also faced cultural and structural barriers, such as conservative peer review practices and publications behind paywalls.

Conclusions: This thesis indicates that persons living with long-term conditions and informal caregivers are central stakeholders in driving health service development and research forward to meet the needs that matter to persons living with long-term conditions and informal caregivers. The findings elucidate that continued efforts are needed to facilitate for patient innovators, as well as other patient and public contributors, to contribute with their experiences and expertise to the production of relevant and meaningful research and services supporting self-care and informal care.

List of scientific papers

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.
https://doi.org/10.1016/j.socscimed.2021.114575

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.
https://doi.org/10.1136/bmjopen-2022-071363

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]