Internet based support in the rehabilitation of Danish cancer survivors. A randomized anthropological and epidemiological study

Mette Terp Høybye

Research output: ThesisPh.D. thesis

Abstract

During the past decade, the Internet has become a widely used support for cancer patients in various frameworks. Studies indicate that the introduction of Internet-based support interventions to cancer survivors may result in significant positive outcomes with respect to social support, information competence, control of depression and self-perceived health status by introducing internet based support interventions to cancer survivors. The overall quality of life of cancer survivors has not been shown to be improved; however, explorative studies suggest that Internet groups empower cancer patients and facilitate new social networks.
Drawing on methods of both epidemiology and anthropology, the work described in this PhD thesis represents an investigation of the use of and effects on a number of psychosocial outcomes of a randomized, self-guided Internet support group intervention for cancer patients within a larger rehabilitation programme. The support was available for 13 months. A further aim was to explore the relation between social life and healing that has been reported in Internet-based cancer support groups.
The study is based on 921 persons randomized to an Internet intervention or to a control group after a 1-week course at the Dallund Rehabilitation Centre in Denmark during 2004–2006. All the participants were followed up for 12 months with a comprehensive psychosocial questionnaire. The participants in the intervention group formed 26 Internet self-support groups, seven of which were studied in ethnographic fieldwork by participant observation and in-depth interviews over 13 months.
As the Internet intervention was provided in the context of a psychosocial cancer intervention at the Dallund Rehabilitation Centre, the first descriptive analyses were of the baseline characteristics of the 2174 cancer survivors who attended a rehabilitation course at the Centre with respect to cancer site, sociodemographic variables, social network, lifestyle, self-rated health and the prevalence of cancer-related late effects between 2002 and 2005. The results indicate that Danish cancer survivors experience considerably reduced physical health, possibly as late effects of treatment. We studied the social and psychological characteristics of a smaller group of 211 cancer survivors as part of a feasibility study for the randomized intervention, to explore whether differences in sociodemographic characteristics affect interest in participating in Internet self-support groups. The results showed that cancer survivors who participated in these groups belonged to higher socioeconomic groups (based on household income and employment) than nonparticipants. To assess the outcome of the randomized Internet intervention (n = 921), we investigated whether introduction to a self-guided support group on the Internet after the 1-week rehabilitation course improved adjustment to cancer over and above any possible general effect of participation in the rehabilitation program. Only transient differences in coping and adjustment to cancer were found at the 6-month follow-up, with the control group reporting better adjustment. The randomized trial thus did not confirm the expected potential of Internet support groups in cancer rehabilitation.
To understand the complex use of Internet support groups and their transformational potential an anthropological study was carried out elucidating how participants used the Internet groups. Participants mainly reported both in daily group discussions and in interviews that participation in this social community greatly improved their everyday lives and their struggle with cancer. However, the anthropological study further shows that the forming of a shared language by Internet cancer support groups both shapes and disrupts a shared social space, sometimes causing anxiety within the groups. Such anxiety and difficult presence was confirmed in online focus-group interviews. These differences in the findings and the interaction of epidemiology and anthropology in health research are discussed in particular.
Use of the Internet in cancer treatment and care holds much promise for future clinical practice; however, evidence for a positive effect of Internet-based self-help support groups on quality of life is still lacking. Health professionals and policy-makers should reflect on this lack of evidence, not expecting clinically relevant psychosocial improvements with unassisted use of peer support groups, when implementing this new technology in cancer care.
The divergent results of this thesis suggest that outcome measures of psychological well-being, quality of life and coping do not capture all the social and relational issues reflected in Internet-based support groups and which may be important to cancer survivors.

Original languageEnglish
Supervisors/Advisors
  • Johansen, Christoffer, Supervisor, External person
  • Hastrup, Kirsten, Supervisor, External person
Publication statusPublished - 2009
Externally publishedYes

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