Design of Web-based Support Systems in Less Structured Contexts - the Case of Young Carers
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Abstract
Background
It has been suggested that at least 4% in a given population of young people are young carers (YC), providing substantial support to diseased family members. Many of them have little or no help from society, partly due to societal neglect of this group and partly due to barriers for help seeking, such as shame, stigma and distrust in health and social care resources (HSCR). The group addressed in this abstract, YCs aged 16-25 and supporting someone with mental illness, may find those barriers even more constricting. Research on web-based support for this group are limited, although web-based support may have a prominent role to play in reaching and supporting them. However, web-based support systems (WBSS) are often built around an educational part and a peer-support part, while a number of recent studies of ICT-support to homeless people, at-risk teens and YCs point to additional needs not addressed in such supports. A common factor among these groups seems to be a lack of support in their life context and at the same time barriers to reach important HSCRs. Our objective is to outline a model for web-based support aiming to increase YCs' opportunities and willingness to overcome barriers in reaching HSCRs that they need.
Methods
Data from two qualitative studies has been used. Study one was based on interview data (N=12) and explored YCs' needs in their care situation and in relation to a hypothesized WBSS. Data was transcribed and analyzed with content analysis. Study 2 explored YCs' views (N=8) of a WBSS when acting as co-designers in a participatory design (PD) process. Five consecutive design meetings were video recorded and analyzed with content analysis.
Results
1) In addition to needs of knowledge (e.g. for understanding mental illness) and needs for communication (e.g. with peers having similar experiences), YCs wanted the opportunity to meet peers in real life and to get “real-life†support. Important real-life support could be e.g. acute relief in the care situation and structured family interventions. Young carers also expressed need for greater commitment from HSCRs. 2) Young carers emphasized human qualities of the WBSS (personification), like competence and a serious attitude. They indicated the importance of commitment and sensitivity in any action on the WBSS. The website was viewed not only as a source for information, knowledge and exchange, but also as something to relate to and trust.
Conclusions
Localization, mediation and personification may be important properties of a WBSS aimed at YCs. A locally anchored WBSS could facilitate real-life connections between YCs (observing security issues) and would be a prerequisite in helping YCs to become familiar with HSCRs in their place of living. A dedicated staff can build relations to and explore local HSCRs and mediate these experiences on the WBSS. A personified WBSS may offer not only increased visibility, transparency and familiarity of HSCRs, but also trust and support for YCs to overcome barriers in reaching HSCRs.
It has been suggested that at least 4% in a given population of young people are young carers (YC), providing substantial support to diseased family members. Many of them have little or no help from society, partly due to societal neglect of this group and partly due to barriers for help seeking, such as shame, stigma and distrust in health and social care resources (HSCR). The group addressed in this abstract, YCs aged 16-25 and supporting someone with mental illness, may find those barriers even more constricting. Research on web-based support for this group are limited, although web-based support may have a prominent role to play in reaching and supporting them. However, web-based support systems (WBSS) are often built around an educational part and a peer-support part, while a number of recent studies of ICT-support to homeless people, at-risk teens and YCs point to additional needs not addressed in such supports. A common factor among these groups seems to be a lack of support in their life context and at the same time barriers to reach important HSCRs. Our objective is to outline a model for web-based support aiming to increase YCs' opportunities and willingness to overcome barriers in reaching HSCRs that they need.
Methods
Data from two qualitative studies has been used. Study one was based on interview data (N=12) and explored YCs' needs in their care situation and in relation to a hypothesized WBSS. Data was transcribed and analyzed with content analysis. Study 2 explored YCs' views (N=8) of a WBSS when acting as co-designers in a participatory design (PD) process. Five consecutive design meetings were video recorded and analyzed with content analysis.
Results
1) In addition to needs of knowledge (e.g. for understanding mental illness) and needs for communication (e.g. with peers having similar experiences), YCs wanted the opportunity to meet peers in real life and to get “real-life†support. Important real-life support could be e.g. acute relief in the care situation and structured family interventions. Young carers also expressed need for greater commitment from HSCRs. 2) Young carers emphasized human qualities of the WBSS (personification), like competence and a serious attitude. They indicated the importance of commitment and sensitivity in any action on the WBSS. The website was viewed not only as a source for information, knowledge and exchange, but also as something to relate to and trust.
Conclusions
Localization, mediation and personification may be important properties of a WBSS aimed at YCs. A locally anchored WBSS could facilitate real-life connections between YCs (observing security issues) and would be a prerequisite in helping YCs to become familiar with HSCRs in their place of living. A dedicated staff can build relations to and explore local HSCRs and mediate these experiences on the WBSS. A personified WBSS may offer not only increased visibility, transparency and familiarity of HSCRs, but also trust and support for YCs to overcome barriers in reaching HSCRs.
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