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Ramfelt, K., Andersson-Gäre, B., Andersson, A.-C. & Petersson, C. (2023). ‘It's like a never-ending diabetes youth camp’: Co-designing a digital social network for young people with type 1 diabetes. Health Expectations, 26, 662-669
Open this publication in new window or tab >>‘It's like a never-ending diabetes youth camp’: Co-designing a digital social network for young people with type 1 diabetes
2023 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 26, p. 662-669Article in journal (Refereed) Published
Abstract [en]

Introduction: Living with a chronic condition such as type 1 diabetes (T1D) affects everyday life and support from others experiencing a similar situation can be helpful. A way to receive such support is to use an online network where people can connect and share experiences. Research has described the benefits of using such tools for connecting patients. The aim of this study was to describe the co-design of a social network for young people with T1D and to describe their experiences when using this network.

Methods: A co-design approach was used, following three steps adapted from Sanders and Stappers (2008). In all, 36 adolescents with T1D participated. Data in the form of recordings and notes from telephone interviews, workshops and focus groups were collected and then analysed using content analysis. Numerical data from the digital platform were also used.

Findings: For the interpersonal values, supporting, learning and relating to emerge, the framework of the network must be appealing and user-friendly. The limits of time and place are eliminated, and there is a possibility for many more to join in.

Conclusion: Co-design ensures that what stakeholders think is important forms the basis for the design. The interpersonal values that are promoted are ones that only the exchange of lived knowledge and experience can generate. It is complementary to the support that healthcare professionals can offer; thus, this kind of social network is important for improved, coproduced care.

Patient or Public Contribution: The participants in the present study were persons living with T1D. They were active co-creators from the start to the end. An adult person with experience of living with T1D was involved as an advisor in the research team when drafting the manuscript.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
adolescents, co-design, improvement, social network, type 1-diabetes, value creation
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-59284 (URN)10.1111/hex.13690 (DOI)000899348900001 ()36541231 (PubMedID)2-s2.0-85144285388 (Scopus ID)GOA;;851400 (Local ID)GOA;;851400 (Archive number)GOA;;851400 (OAI)
Funder
Vinnova, 2018‐01442
Available from: 2023-01-03 Created: 2023-01-03 Last updated: 2024-10-17Bibliographically approved
Ramfelt, K., Petersson, C. & Åkesson, K. (2020). Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD). Journal of Patient Experience, 7(6), 1181-1188
Open this publication in new window or tab >>Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD)
2020 (English)In: Journal of Patient Experience, ISSN 2374-3735, Vol. 7, no 6, p. 1181-1188Article in journal (Refereed) Published
Abstract [en]

Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D. A modified variant of EBCD based on focus groups, workshops, and interviews with stakeholders was used. The improvement proposal parental coaching was tested and was appreciated by the participants. The qualitative content analysis of the interviews showed that the coaching program contributed to better confidence and self-efficacy. Both coaches and coachees described that the coaching contributed to better competence and a feeling of hope after attending the coach program. Experienced-Based Co-Design gave an opportunity to explore what?s important to improve, based on experiences and needs of several stakeholders.

Place, publisher, year, edition, pages
Sage Publications, 2020
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-51310 (URN)10.1177/2374373520969005 (DOI)000604911300065 ()33457563 (PubMedID)POA HHJ 2020 (Local ID)POA HHJ 2020 (Archive number)POA HHJ 2020 (OAI)
Available from: 2020-12-22 Created: 2020-12-22 Last updated: 2024-10-17Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-5350-3419

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