”Doing action-research on online self-help groups –

advantages and challenges”

TTeC 12.06.06marianne.trondsen@telemed.no

anne-grete.sandaunet@telemed.no

Background

• Need for research-based knowledge about e-health: both quantitative and qualitative research

• Growing demand for more practice-oriented forms of research

Action Research

• Focuses on enhancing learning processes to support an organisation’s or a community’s capacity to solve pertinent problems

• Emphasises the partnership between stakeholders and researcher

• The researcher is active in order to facilitate changing processes

• Framed by a reflexive research methodology

Aim of presentation

Outline advantages and challenges by use of AR in assessments of internet based health services

Study examples

• Two explorations of the potential of online exchange of lay experiences

• Study I: breast cancer patients• Study II: adolescents (15-18 years old)

with mentally ill parents• Establishment of two password-

protected, anonymous SHGs, self-selected participants

• Involvement through moderator roles

Study I: breast cancer patients

• Collaboration between NCT and Norwegian Cancer Association

• 40 participants• 1114 postings, 16 months study period

Study II: Adolescents with mentally ill parents

• Collaboration - NCT and The Child and Adolescents Psychiatric Clinic at the Hospital of Sørlandet, Norway

• A part of the website www.morild.org

• Started December 2005 - an ongoing study

The intervening role

Moderation of the groups:

• Ensure that the communication in the groups corresponds to Norwegian legislation and the customs of the groups

• Awareness to group-processes

• Facilitating activity

Advantages

• Flexibility, immediate use of acquired experience

• Extend the possibilities for contextual knowledge

Challenges

• Ethical dilemmas

• Lack of non-verbal communication

Conclusions

• AR can contribute to effective knowledge production within explorations of e-health applications

• However, the physical distance combine with the area of research, require continuous assessment, sensitivity and a solid foundation of the project