Young Adult Carers in the Risk Zone. Design of a Health-Promoting, Randomized Two-armed Controlled Trial for Young Adults Who Support People with Mental Illness
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Abstract
Background
Currently, most psychiatric care takes place in out-patient settings, and family members and close friends often assume great responsibility for the mentally ill. It is important, therefore, to learn how best to support patients and the people who care for them, which forms of social support are of greatest value to those struggling with mental illness, and how individuals benefit from specific components, such as information and education, in their daily lives. Pedagogic processes integrated with person-centred care and treatment may be increasingly important to study. The overall aim of this study is to evaluate the quality and usefulness of information and communication technology (ICT) health efforts aimed at young adults who are close relatives or friends of individuals with mental illness.
Methods
The participatory design of the program comprises three phases: (I) a survey of the needs of young relatives and close friends for internet-based information, education, and support, (II) the development of a website, and (III) an intervention based on the previous phases. A randomized two-armed controlled trial of the intervention, with follow-ups at 4 and 8 months, should be conducted in a randomized sample of young adults aged 16–25 years living in community in Sweden. To allow for drop-outs, an estimated total of 400 participants who support a family member or a friend with mental illness would be needed in the study.
Conclusions
We believe that the design of the study, and the randomization procedure, outcome measurements, and study protocol meetings should ensure the quality of the study. Furthermore, as the participatory design is one of the foundations of the intervention of this project, the involvement of young adult informants throughout the study should have the potential to effectively target the heterogeneous needs of the young adult carers.
Currently, most psychiatric care takes place in out-patient settings, and family members and close friends often assume great responsibility for the mentally ill. It is important, therefore, to learn how best to support patients and the people who care for them, which forms of social support are of greatest value to those struggling with mental illness, and how individuals benefit from specific components, such as information and education, in their daily lives. Pedagogic processes integrated with person-centred care and treatment may be increasingly important to study. The overall aim of this study is to evaluate the quality and usefulness of information and communication technology (ICT) health efforts aimed at young adults who are close relatives or friends of individuals with mental illness.
Methods
The participatory design of the program comprises three phases: (I) a survey of the needs of young relatives and close friends for internet-based information, education, and support, (II) the development of a website, and (III) an intervention based on the previous phases. A randomized two-armed controlled trial of the intervention, with follow-ups at 4 and 8 months, should be conducted in a randomized sample of young adults aged 16–25 years living in community in Sweden. To allow for drop-outs, an estimated total of 400 participants who support a family member or a friend with mental illness would be needed in the study.
Conclusions
We believe that the design of the study, and the randomization procedure, outcome measurements, and study protocol meetings should ensure the quality of the study. Furthermore, as the participatory design is one of the foundations of the intervention of this project, the involvement of young adult informants throughout the study should have the potential to effectively target the heterogeneous needs of the young adult carers.
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