Young carers as co-designers of a web-based support system – the views of two publics

Elf, Mikael; Rystedt, Hans; Lundin, Johan; Krevers, Barbro

doi:10.3109/17538157.2012.678450

Cited by 10 publications

(26 citation statements)

References 30 publications

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“…The remaining 10 were preventive interventions [ 48 - 51 , 56 - 61 ]. UCD [ 7 , 53 - 55 ], PD [ 50 , 52 , 61 , 62 ], and PAR [ 48 , 51 , 59 , 60 ] were the most common methodologies used (4 projects each). PD provided the sub-framework for an iterative design process in a further 4 projects [ 49 , 53 , 55 , 56 ].…”

Section: Resultsmentioning

confidence: 99%

“…Most projects (11 of the 17) involved young people (and other relevant stakeholders) for principally consumerist purposes [ 7 , 48 , 49 , 51 - 55 , 57 , 58 , 62 ]; that is, to create usable, effective, and efficient interventions. A further 2 reported elements of both empowerment and consumerism [ 36 , 50 ]. No projects actively involved youth consumers in the project planning stage, with project aims and goals unreflective of their input.…”

Section: Resultsmentioning

confidence: 99%

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Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

Orlowski¹,

Lawn²,

Venning³

et al. 2015

JMIR Human Factors

125

129

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BackgroundDespite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth.ObjectiveTo investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth.MethodsFifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis.ResultsA total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation.ConclusionsConsumer consultations helped shape intervention design. However, with little evidence of outcomes and a lack of implementation following piloting, the value of participatory research remains unclear.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

Orlowski¹,

Lawn²,

Venning³

et al. 2015

JMIR Human Factors

125

129

View full text Add to dashboard Cite

show abstract

“…To support self-management in daily life, contact was offered with either peers (Cases 2 and 3) or healthcare professionals (Cases 1 and 2). For more details on each case, please see publications [ 1 , 5 , 6 , 22 ].…”

Section: Methodsmentioning

confidence: 99%

“…Increasingly, different types of web-based support are being developed for patients in managing their illness [ 1 – 6 ]. It has been argued that efficient support for managing chronic illnesses and conditions should be tailored to each person and his or her needs and preferences.…”

Section: Introductionmentioning

confidence: 99%

Role of Theories in the Design of Web-Based Person-Centered Support: A Critical Analysis

Ranerup

Sparud-Lundin

Koinberg

et al. 2014

International Journal of Chronic Diseases

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Objective. The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person-centered approach in the design and evaluation of web-based support for the management of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4–6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16–25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed by means of a cross-case methodology. Results. The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and well-being. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support.

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“…Generally, codesign include the creation of a group comprised of 8 to 12 people, who jointly develop an eHealth instrument over three to five codesign meetings, lasting between 90 minutes and a day [31][32][33][34][35][36]. Nonetheless, in the context of the present project, it is, on one hand, unrealistic to develop a tool supporting the process of help seeking behavior in merely five working sessions.…”

Section: Phase 2 (Objective 2): Develop a Tool For Caregivers Whichmentioning

confidence: 99%

Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Seniors Through eHealth: Protocol for a Multicentric Codesign (Preprint)

Latulippe¹,

Guay²,

�thier³

et al. 2018

Preprint

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Young carers as co-designers of a web-based support system – the views of two publics

Cited by 10 publications

References 30 publications

Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

Role of Theories in the Design of Web-Based Person-Centered Support: A Critical Analysis

Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Seniors Through eHealth: Protocol for a Multicentric Codesign (Preprint)

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