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Hoybye_PhD defense talk_December 21, 2009
 

Hoybye_PhD defense talk_December 21, 2009

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  • Hello and welcome – my name is Mette Terp Høybye - and I work at the Department of Psychosocial Cancer Research I’ll spent the next 45 minutes presenting you to the main findings and discussion of my PhD study “Internet-based support in the rehabilitation of cancer survivors” - a randomized study drawing on methods from anthropology and epidemiology The academic advisors on my work have been: Professor Christoffer Johansen and Professor Kirsten Hastrup
  • The assessment committee on my thesis was: Associate professor Klaus Høyer Research Programme Director Tine Curtis and Professor Alex Jadad
  • Starting out the research for a PhD project to some extent resembles the perspective here at the bottom of the stairs of the diving platform – you assume that the view will be great once you reach the top, but standing at the first step you can’t really see the end of it Standing at the platform today the view may not be as clear as I once imagined – what is clear however is, that the steps I took to get here all in different ways shaped the study and the results I’ll be presenting to day. Some steps were more elegantly made than others – you may at the end find that I skipped a few steps – but I hope you’ll dive in with me for a discussion of the ambition, the context, the challenges, the limitations and the results.
  • -My PhD thesis consists of five papers – two published and three submitted or re-submitted and in review -The papers represent the two different scientific traditions employed in this study – and does so quite rigidly. I chose this format to comply in the best possible way with the expectations and demands of the two disciplines. --In the talk today I will focus on paper III and V, to reflect the core findings produced from the two disciplines and only very briefly summarize the results of the remaining papers, -and then move on from there to discuss the interaction of the disciplines in this work and where that might bring us
  • The key topics of this work: RECOGNITION; RELATION; CARE manifest themselves and become significant in the empirical material in this study as central issues in cancer rehabilitation - In this way they are both the story being told by the material – and the story I will tell you through my analysis
  • While being key empirical topics, they at the same time represent a second level in this work as key to the methodological, theoretical and political implications of the research presented here. Roughly put – in this simplified model – the two scientific viewpoints draw on very different techniques in the production of knowledge. The basic assumption of this work is that a relation of the two viewpoints holds the potential to open up a new point of research beyond the question of evidence in either one The main focus in this talk will be to exemplify how I sought to do so in my PhD thesis
  • As in all other aspects of life time is an important context shaping our research practice Studying a phenomenon on the internet there is no way to keep up with time – the focus of our research will be outdated by reality before we draw our conclusions. I’ll ask you to keep this in mind today – when some of the technological features etc. you’ll hear about may seem quite old-fashioned by now – please remember, that this study was designed when what we call social media – was still ‘new media’ – back in the pre-Facebook era The available technology and the common practice of technology was quite different from today – those 5-6 years back
  • - The rise of the internet has opened new possibilities to people with cancer for connecting to health services as well as to others with cancer Reviews by Eysenbach et al. 2004, Klemm et al. 2003 have shown that a wide range of services on the internet is extensively accessed and used by cancer patients for support and educational purposes What previous studies - like van Uden-Kraan et al. 2009, Shaw et al 2006 and Høybye et al. 2005 – stress is, that the internet may provide a resource to people with cancer opening new possibilities for acting on the experience of illness and bridging the social isolation
  • Three previous, randomized studies of cancer support groups up till 2008 - suggest different positive outcomes on an number of important variables
  • An important issue when we seek to compare these studies is to consider the type of internet intervention that participants were offered in the studies – randomized studies of internet cancer support groups conducted so far fall roughly into 3 categories: the structured professional group intervention with an educational program the unmoderated group – in combination with a structured educational program Or the peer-to-peer internet group – unmoderated and with not structured content basically what they offer is very different – must be assumed to have a high impact on the outcomes detected we chose to provide and study un-moderated, un-structured group interaction on the internet – as this is still the most common and most widely accessible type of internet support interaction CLARIFICATION: when I use the term internet support groups (ISG) – or simply internet group - in this talk with regard to my own study – what I am referring to is a peer-to-peer internet group
  • Definition of cancer rehabilitation in this study: rehabilitation should assist people living through an experience of cancer to obtain the highest possible functional level – and support through challenges However - acknowledge the experience of cancer as an existential challenge, where cancer survivors express the inability to return to life as it was; their life now being characterized by the imminent risk of recurrence The potential of the internet intervention in this study was therefore to support the reconfiguration of life by cancer survivors in interaction with others experiencing similar challenges
  • Before turning more explicitly to describe the intervention proposed in this study to support cancer rehabilitation, I will very briefly introduce the FOCARE research project, in which this study is a part FOCARE – (Forskning I Cancer Rehabilitering) – is a large research project on cancer rehabilitation in relation with the Dallund Rehabilitation Center – and carried out by the Department of Psychosocial Cancer Research since 2002. Drawing on questionnaire data produced for the FOCARE study in this PhD study sets the frame for the questions I could pose to the material in the epidemiological study, with regard to the information available
  • The study took outset in the assumption that internet-based peer-to-peer support groups could support the process of rehabilitation of cancer survivors – partly based on the reflections of the previous literature and on my own previous ethnographic research in the field Further, to try to address some of the gaps that seemed to be in previous literature, this study sought to combine the power of counting with the power of telling
  • Participants in this study were all participants at a course at the Dallund Rehabilitation Centre This means that they met each other for a 6-day residential, psycho-educational intervention at the center. About 20 cancer survivors participate in each course The intention of the internet intervention was to bring this very central but informal activity of a rehabilitation course at RC Dallund – chatting in the courtyard – sharing experience - on to the internet, once the participants went home
  • The study is based on the same inclusion and exclusion criteria as the FOCARE study - in addition to this course weeks focusing on cancer survivors >50 y - excluded
  • Turning first to the epidemiological study I will briefly sum up the main findings of the first two papers and then present the methodological approach and findings of the third study in more detail.
  • Self-reported questionnaire – developed for FOCARE + internet questionnaire questionnaires were sent out by ordinary mail to participants at baseline = 14 days prior to the rehabiliations course at Dallund with they enrolled at + 1, 6 and 12 months Questionnaires were the same at all time points Paper I-III are based on this material. - overall in this study the response rate was 85%
  • Based on the data from the two questionnaires the epidemiological studies in this PhD thesis examined the three first research questions:
  • The study elucidates that the challenge of cancer continues far beyond medical treatments Most of the participants were young women who had had breast cancer. They were generally well educated and working (Paper I, Table 1). The cancer survivors reported having comprehensive social networks and being physically active (Paper I, Table 2). Several cancer-related symptoms were reported by participants with cancers at selected sites, of which fatigue was the most prevalent. - - The results indicate that Danish cancer survivors experience considerably reduced physical health, possibly as late effects of treatment and demonstrates a need for rehabilitation. Compared 289 non-responders with the 1876 participants – gender, age, diagnosis (from cpr number and reference sheet) – we had no access to further information about the non-responders – were not asked about why they did not participate – a decision made in agreement with the center who were concerned that participants at the rehabilitation center should feel obliged and pressured into participation in the FOCARE study. - more men, - more survivors of lung + head-and-neck cancer did not participate Non-responders (jvf. bedømmelse) More info to determine systematic differences? (jvf. bedømmelse)
  • --This study examines the motivation for using internet support groups among cancer survivors following a week course at the Dallund Center -- The study finds a social inequality in who takes up participation in internet support groups – showing that users of the groups have a higher household income and are actively affiliated with the working market. -- Further the non-user seem to apply more passive coping strategies
  • Parallel group cluster randomization based on the course schedule provided each semester by the Dallund Rehabilitation Center Assignment of course weeks to intervention or control group /condition computerized random-number generator – administered by a programmer in the department following group assignment – groups disclosed – unblinded On level of individual: difference of 89 persons – due to different participation size in course weeks – we could not know this before hand. Only knew that max 20 persons per course week. - Course weeks were in that sense – in practice – not comparable – which can be rendered a flaw of the randomization - I will elaborate on this later on
  • Dallund Rehabilitation Center provided course schedule each semester. As you can see here – unfortunately the randomization procedure in 3 of 4 instances allocated more weeks to the control condition
  • Study is based on 921 cancer survivors randmomly assigned for intervention or control Study endpoints: first second
  • Analysis were carried out on an intention-to-treat-basis Study follows the CONSORT guidelines
  • Distribution of demographic characteristics in the two conditions significantly different – groups assigned to intervention – contained more men, younger persons and more cohabiting persons Different types of cancer – breast cancer (58%) No difference in psychosocial characteristics 60% of participants in the intervention joined a support group during the study
  • --60 % generally use the internet --At baseline only 7% in the intervention group and 5% in the control group report to have previously used chat, mailing lists or groups on the internet
  • Both groups well-being improved during 12 months - what you see here is the baseline level and for each follow-up time you the see the measure of the variable at that point in relation to the baseline score. This means that the negative numbers represent decreases in e.g. ‘mood disturbance’ or ‘anxiety’ between baseline and the follow-up. What we find then is, that there is no effect of internet groups on psychosocial well-being or adjustment to cancer – On the contrary the intervention group improved less on the three measures on POMS confusion/bewilderment at 6 m fu – and likewise improved less on Mini-MAC anxious preoccupation and helplessness -- you see this e.g. here (DEPRESSION) where the control group decreased 1.5 while the intervention group only decreased 0.8 HOWEVER: intervention group at 12 months reported higher vigor/activity on the POMS scale
  • Looking closer at the differences in changes within the intervention group we found that the participants who take active part in an internet support group report an increase in fighting spirit at all times of follow-up – while fighting spirit decreases in the non-active participants at 6 and 12 months - fighting spirit increase in active participants over all three follow-up times, while it mostly decreases in the non-active group
  • Move on to the anthropological study – where I’ll again focus on one paper
  • How is the need for rehabilitation shaped by and situated in social interaction with significant others? How do internet support groups decrease the presumed social isolation of cancer patients as a process of rehabilitation, and how can this be studied ethnographically on the internet?
  • - the ethnographic fieldwork for this work was carried out between 2004-2006. the main part of the fieldwork was carried out on the internet - included participant observation, interviews and focus groups online
  • - What the anthropological study in this thesis finds is, that the need for rehabilitation is to a large extent socially configured, - shaped and situated in the interaction with significant others – expressed in needs for being treated as unique, being listened to and having time - OVERALL – a need for recognition! - this is explored in Paper IV the internet support groups mediates such needs for rehabilitation – by providing a network of similar others – who become significant in the everyday challenges of living with cancer – and the exchanges about this life on the internet
  • – Through my presence in the daily interactions in the internet support groups I explored the social practice shaped in the particular groups, which provided a possibility to move beyond the actual words written in the groups to an understanding of the tacit, bodily experience being created. This resembles what Judith Okely (1994) has described as gaining ‘vicarious knowledge’ of the experience of the people we study, through our own senses and emotions in the field. Based on this ethnographic presence, I argue in this thesis that the writing of posts in internet cancer support groups produces a collective language among similar others – creating a shared social space – that bridge the experience of social isolation often voiced to be an effect of cancer. But at the same time I show how this image of communion may be shattered by the death of group members – which creates frustration, sadness and disturbance and presents a challenge that produces a need for introducing a language of separation in the group, where differences to the dead person are underlined. Make a reflection on the role of the anthropologist in inventing own field etc. – jf note book
  • What I will focus the discussion on here is three core issues: - methodological considerations discrepancy of findings thoughts on interdisciplinary research
  • Advantages: Strengths of this study include the use of a randomized design; a relatively large sample size (n=921); the 12-month follow-up; - the interdisciplinary approach
  • as also kindly observed by committee on my thesis, the radomization procedure of the study was not successful - we tried to make the intervention work in an everyday setting that resembled what participants could have produced themselves – and using the facilities at hand As mentioned previously course weeks ended up not having the same number of participants, which we could not foresee at the time of randomization. Often the number of participants in a course were changed up till the very beginning of the week, enrolling more participants to fill up available space – or due to cancellation by some participants => more control participants - 3 of 4 randomization sequences allocated more course weeks for the control condition Further course weeks were organized around different themes. – the computer program performing the randomization was not designed to take the different themes into account. This would have greatly complicated the randomization procedure as we did not know the themes for more than 6 months at a time – and we could not know if the themes would be repeated later on. Matching weeks would therefore have greatly prolonged the study The need to perform cluster randomization as opposed to randomization by individual, is a large part of the explanation for how we ended up assigning a large number of individuals ( n = 194/361) to the intervention condition who did not adhere to use of Internet peer-support groups. One may speculate….. that the participants who did not take up participation in the groups would probably have selected themselves out of the study – had they been asked of their interest in participating in such a study. This could be what we see reflected in the approximately 65% recruitment rates reported by both Gustafson and collegues and Winzelberg and collegues – around which is similar to the 60% adherence to the intervention in this study 40% did not join or wrote only 2 messages or below – we could have studied this further - with different methodological approaches (e.g. qualitative or by questionnaires) – - but this was not possible within the scope and timeframe of the project IMBALANCES AT BASELINE: - the study is limited by the unequal study groups at baseline with regard to sex, age and marital status. as kindly observed by reviewers the imbalances at baseline in this study undermines the randomized design and reflects a failure in the randomization process/ procedure – clusters introduced skewness, the 4 times 6 months randomization further skewness - However, as I observed before that study operated under the constraints of an everyday context in a cancer rehabilitation center. We did not design the rehabilitation intervention provided or the way the themes of the course weeks were planned, which means that we could not know the line of courses more than 6 months in advance. To counter the observed imbalances and address the problem, we adjust for the differences and the baseline score in the analysis of the data (Gustafson et al does so to) Further we studied the effect of these possibly confounding factors by tests of interaction and found no persistent trends of interaction HETEROGENEITY – Further, the study is limited by the heterogeneity of cancer diagnoses and treatments and treatment stages, which may have reduced the statistical power. I completely agree with the committee that a true randomized study would be carried out in a population of homogeneous cancer patients providing the opportunity to eliminate the confounding variables with regard to diagnosis, stage and treatment. We did not have clinical information with regard to stage to take into account in the analysis. Had we been able to do this it could have brought very interesting perspectives to questions on the social interaction of persons in different phases of their experience of cancer – and how this could possibly affect anxiety in the internet groups. GENERALIZABILITY - of the findings in this study may be somewhat limited due to the particular design of the intervention extending the interaction and the intervention of a previous rehabilitation program. However, generalizability with regard to the study population is possible to some extent, as patients in this study, compared to previous studies in cancer patients show similar levels of baseline distress (Baker et al., 2002 and Salzer et al, in press).
  • Randomization procedure failed – should call this a controlled study - study of group exposed and group not exposed The failure reflects the important ways in which the context affected the possibilities with regard to recruitment and design
  • - Intriguing discrepancy in the findings produced in this study from the two different scientific viewpoints: ---In the epidemiological, randomized study participation in the internet groups was not related to a report of improvement of well-being above what was reported by the control group. -- In the anthropological study the analysis showed that the internet groups are considered to be a meaningful practice providing recognition and social strategies for handling the experience of cancer. What is this apparent paradox about? To explore this, we need to move into the second issue at stake in this thesis – being the interaction of methods in this thesis and how they may supplement each other In research of epidemiology or anthropology we practice our questions and objects of study in very different ways….. – and we relate to the answers we get from very different positions. -Anthropology has a long tradition of explicit reflection on positions and representations of knowledge. This is apparent in the open, exploratory, reflexive style of most questions raised within this discipline, that acknowledge the situated perspective of the researcher – and her questions. Still, there is at times a tendency to analytically separate the objects studied from the meaning people ascribe to them - In epidemiology the challenge is to some extent the same – though grounded in a very different scientific viewpoint – in this study we use questionnaires – we pose questions and presume the answers we get to be directly related to the question we posed – and then we summarize them. - this produce a central assumption for the way in which we afterwards scale the answers we get, transforming them to expressions of certain conditions or emotional states of being. - but we tend to leave no space for reflection about the relation between question and answer. However, when we listen to how participants discuss the questions we pose, as I often incidentally did over supper at the Dallund Center before the internet teaching sessions, it is clear that when we ask questions, as in the FOCARE questionnaire we impose new reflections on the persons we ask - e.g. participants were asked to list the symptoms they suffered after cancer by checking a list of symptoms. Filling out this question would often raise a new awareness of symptoms as being related to cancer in the participants – in ways that they had not previously been aware of. This meant that from being someone suffering a head-ache – one would as a reaction to the question be transformed into someone with a cancer late-effect of head-ache. we may then employ different analytical practices to understand the answers from questionnaires as uniform indications of x or y – but to the individual cancer survivor our question came to represent a new way of thinking about and expressing a bodily experience – our question thereby came to affect and change the process of rehabilitation to the individual.
  • - This indicates something about the way we relate to and understand the objects we study – and how objects relate - The idea of ‘ praxography’ that Annemarie Mol develops in her book from 2002 ‘The Body Multiple’ may provide a way into thinking about this discrepancy What Mol argues is that ‘to be is to be related’ (2002; p.54) – which is a point that strikes a note from a long line of philosophers and thinkers – Mol argues that the way objects relate to each other does not fit within one fixed hierarchical structure – it is not a question of scale we should instead study objects by the practices that enact them. This means, says Mol – that we move from a transitive perception where the relations between objects are always direct, defined – where e.g. we sum up the number of cancer survivors reporting a head-ache after their cancer and make an assumption about the prevalence of head-ache in a cancer population – moving on a scale But what happens when we ask about head-ache, as I mentioned just before – is that people start thinking about head-aches in a different way. They start practicing head-ache in different ways. Mol suggests, that we should instead engage an intransitive view , acknowledging that there is – ‘no whole that sums up the parts’. - This way of thinking opens up that different or even incompatible objects are at times included in each other. Various objects come together in a single site – at the same time - Head-ache, in this perspective is practiced as different objects in relation to the individual – and to each other – and it holds different meanings. It means in this study that e.g. the confusion or anxiety reported in the questionnaires in this study are not at the ‘other end’ of the scale of emotions – than e.g. the recognition and support observed in the internet groups – confusion and anxiety may be contained within the practice of recognition, while recognition can be included in anxiety. – even though they may in some ways seem discrepant An empirical example of this, could be the reactions to a death in the internet group, as is described in Paper V. : - several expressions of pulling oneself back from the group and drawing oneself into the group at the same time – of enacting horror, grief, compassion and concern at the very same instance. - Reality in this line of thinking is not singular
  • What we have is a multiplication of reality – which kind of side lines ‘truth’ as an object or an outcome of study do you see an old man – or young lovers kissing? Taking this outset has two important, related implications that I wish to point to: - This means that what in this thesis has been called ‘the intervention’ is not a univocal structure. We may pose all kinds of regulations and rules onto our material, to approximate our analysis and our results to something we name the object of our inquiry, but the entity we explore does not stay the same over time – it is constantly changing by the practice of relations within in. – conducting research from this points place focus on internet group as being by their relation to practice - by their enactment – as a process - the internet groups can be many different things depending on everything and everyone that is active while the group is practiced. Our investigation should focus not on the internet group – but on the enactment of the group, the practiced reality of the group – that cannot remain unaltered over time This leads to the second point – that science, as Ian Hacking states (1992; p. 57) is not unified – partly because it is produced by fundamentally different techniques this is reflected quite clearly in this thesis by the techniques of epidemiology and anthropology – what different techniques make – are different things – or in this case even ‘different worlds’ - so we produce different results – epidemiology by the techniques of counting and anthropology by the stories told – and the methods that enact our practice of science make different representations that relate to the object of inquiry in different ways. - Bringing them to relate may – to open up new questions
  • Engaging in interdisciplinary research is basically to take a risk. - as has been kindly noted by the assessment committee on this thesis, the interdisciplinary potential of this work was possibly not all redeemed in this thesis as I stand here today, and as I have worked my way thought the planning and writing of this defense I sense that there is one notch yet to my research that it not fully developed and that I am still struggling to grasp. - yet, I want to insist on the ambition in this work - and hold on to the potential of open endings – and I find it absolutely essential to do so, to open up new questions and produce new insights. - I believe the ethnographic perspective holds a particular potential to this challenge – it positions us to study practice, to follow connections, to pay attention to the structures, to the material presence and to the interaction in all multitudes of shapes. Participation implies presence – and thereby practice – we mediate our understanding by relating and engaging a given practice a potential that can open up new questions to disciplinary practice in different traditions HOWEVER – This points to the practice of knowledge – not as an object out there to be grasped but as socially produced (Paper V) - enacted within disciplines and institutions, reflecting the marks of those environments (40) and shaped by different ‘styles of reasoning’, as Hacking calls it which return as standards of objectivity within their institutional context (46) Different ‘styles of reasoning’ (46) may e.g. be reflected in the use of different languages in different scholarly fields (267), which obviously shapes the forms of argumentation and the scientific field (267;268) as such. Different ‘styles’ are not only different words but also involve fundamental differences in the use of the same word. -- first time I heard about ‘global quality of life’ – then what is local quality of life -- the practice of references and notes…. Using the same words in different disciplines ultimately affects the meaning of the word, illustrating the way in which all scientific analyses are situated within specific domains of knowledge. My PhD thesis exemplifies different styles of reasoning e.g. represented in different styles of writing. The institutional contexts and constrains forming these representations are very strong – should not underestimate the impact of this on the scientific production
  • The study questions the wide held assumptions that the internet by any means provide support to cancer patients – as I find no clear effect of the use of intenet peer-to-peer support groups The study stresses the importance of awareness of the social inequality in the use of such interventions
  • My thesis shows that cancer rehabilitation is a creative social process of change, where the significant self, altered by the existential challenge of illness, is reconfigured in a social environment mediated by stories, on or off the internet, as a new emerging self, anticipating new possibilities for life that reach beyond the challenge of illness. There is no beginning like an open-ending – as the saying goes…. - and this study opens up more questions – as it points to the possibility that the discrepancy of findings in two disciplines is not a paradox but a productive site for new knowledge
  • future interventions in rehabilitation should take a more integrated approach that moves away from an individualization of health and illness to a broader view on the implications of illness as socially constituted. This would imply including the social network and significant relations of patients more actively in interventions to support the patient but also to thereby acknowledge the impact of illness more broadly on a social network. It is my believe that we will within the coming years see a growing number of internet based interventions in Denmark integrating possibilities for support with structured, professional and clinical interventions

Hoybye_PhD defense talk_December 21, 2009 Hoybye_PhD defense talk_December 21, 2009 Presentation Transcript

  • A randomized anthropological and epidemiological study by Mette Terp Høybye, MSc. Academic advisers: Professor Christoffer Johansen, MD, PhD, Dr.Med.Sci. Professor Kirsten Hastrup, MSc, D.Phil., Dr.Scient.Soc.
    • Associate Professor Klaus Lindgaard Høyer, MSc, PhD (Chair)
    • Department of Health Services Research
    • Faculty of Health Research, University of Copenhagen
    • Research Programme Director Tine Curtis, MA, PhD
    • National Institute of Public Health, University of Southern Denmark
    • Professor Alejandro Jadad, MD, DPhil, FRCPC
    • Chief Innovator and Founder, Center for Global ehealth Innovation ,
    • University of Toronto, Toronto General Hospital, Canada
    • RECOGNITION
    • RELATION
    • CARE
    • A few steps behind – reality outdates research
    • information
    • support – bridging social isolation
    • possibilities for acting on illness
    • empowerment
    • health services
    • Past 10 years - several studies suggest a positive effect of the internet on the well-being of people with cancer
    • Three previous, smaller randomized studies (1990-2008)
      • Positive effect on:
        • Depression (Winzelberg et al. 2003)
        • Post-Traumatic-Stress-Syndrom (Winzelberg et al. 2003)
        • Self-rated health (Owen et al. 2005)
        • Information competence (Gustafson et al. 2001)
        • Social support (Gustafson et al. 2001 )
    • Structured, professional group interventions with educational program:
      • Gustafson et al., 2001
      • Winzelberg et al., 2003
    • Un-moderated groups combined with structured educational program:
      • Owen et al., 2005
    • Peer-to-peer internet groups (un-moderated):
      • Salzer et al., In Press
      • Høybye et al. (Paper III)
    • Definition in this study:
      • rehabilitation should assist people living through an experience of cancer to obtain the highest possible functional level – and support through challenges
    • Acknowledge cancer as an existential challenge
      • anticipation of transformation rather than recovery (Warren and Manderson, 1998)
      • reconfiguration – ‘as-if-cured’ (Hansen & Tjørnhøj-Thomsen, 2008)
    • Large research project on cancer rehabilitation
      • Quantitative study: questionnaires - 2002-2008 – N =3656
        • Including randomized study: N =529
        • Focus: physical and psychological late-effects of cancer; working life and cancer;
      • Qualitative study: fieldwork and interviews - 2003-2004
        • The concept of rehabilitation
        • Need for rehabilitation
        • Social relations
    • To explore the transformational potential of internet-based support groups in cancer rehabilitation with attention to the relation between social life and healing in such groups
      • Focus on process – beyond the dichotomy of studying internet groups as form or substance
      • Internet support groups as health technology and technology of the self
      • Employing two different scientific viewpoints
    • Inclusion criteria of FOCARE/Dallund:
      • above 18 years age
      • completed primary treatment for cancer
      • physical ability to participate in activities at center
    • Cancer survivors who were self-selected or randomized to a rehabilitation course at the Dallund Rehabilitation Center – included
    • Course weeks specifically targeting cancer survivors over 50 years of age - excluded
  • a Shacham,1983; Curran et al , 1995 b Watson et al , 1994 c Aaronson et al ., 1993
    • The challenge of cancer continues far beyond medical treatments
    • Reduced levels of health and need for rehabilitation
    • Cancer survivors – a differentiated population
    • Use of internet support groups seems to be unequally socially distributed
    • Users of internet groups – higher socioeconomic status (based on income and employment)
    Non-users – more passive coping strategies
    • Computerized random-number generator
      • March 2004: 6 course weeks randomized
        • 3 allocated to intervention / 3 allocated to control
      • June 2004: 17 course weeks randomized
        • 8 allocated to intervention /9 allocated to control
      • November 2004: 22 course weeks randomized
        • 10 allocated to intervention /12 allocated to control
      • May 2005: 13 course weeks randomized
        • 6 allocated to intervention / 7 allocated to control
    • 921 cancer survivors from Dallund randomly assigned
      • internet support group intervention
      • control group
    • Participants followed-up individually
      • 1, 6, 12 month assessments
    • Study endpoints:
      • Primary: differences in changes in mood disturbance and adjustment to cancer
      • Secondary: differences in changes in self-perceived health
    • Analysis – on intention-to-treat basis
    • By group assignment – based on individual reports
    • ClinicalTrials.gov registration: ID NCT00961610
    • Primary analysis:
      • baseline characteristics compared using t -tests or Fisher’s exact tests
      • linear models – adjusted
      • three follow-up times analyzed separately
    • Secondary analysis:
      • linear models – adjusted
      • linear regression models
    • Distribution of demographic characteristics in the two conditions significantly different
    • 27 of 26 intervention course weeks started internet group
    • 60% ( n = 217/361) of intervention participants joined support group and wrote ≥ 2 messages
    • Group size 2-18 participants
    • 2154 messages posted over 1 year
    • Posting activity peaked in first 3 months
  • Characteristic Internet intervention Control p value a N % N % Ever used Internet information during illness Yes 216 60 262 61 NS* No 129 36 153 35 No data 16 4 18 4 Generally use Internet Yes 216 60 256 59 NS* No 129 36 158 37 No data 16 4 18 4 Use of Internet for information or support on cancer Internet in general 97 27 121 28 NS* Via e-mail 44 12 46 11 Via chat, mailing lists, self-help groups 24 7 22 5 No 178 49 224 52 No data 18 5 20 5 * Excluding missing data or unknown status a Chi-square or Fisher exact test
    • Use of internet peer-support groups by cancer survivors – no improvement of well-being
    • Transient difference in change between groups at 6-months – intervention group reporting less improvement
    • Ethnographic fieldwork (2004 – 2006)
      • participant observation online – 7 internet groups – 13 months
      • in-depth interviews – 10 key informants – three times over one year
      • four online focus group interviews
    • Key informants purposely selected to reflect broad range of diagnoses, age, gender, education, urban-rural location and employment
    • The need for rehabilitation is to large extent socially configured – shaped in interaction with significant others
    • Expressed as needs for:
      • time
      • being listened to
      • being treated as unique
    • RECOGNITION
    • Similar others (Ben-Ze’ev, 2004)
    • Image of communion (Anderson, 1995)
    • Social interaction facilitates a process of rehabilitation
    • Language of collectivity
      • similar experience
      • shared social space
    • Language of separation
      • progressive illness
      • death
    • Study is a controlled study – not classically randomized
      • does not fulfill the criteria
      • randomization – trapped
    • Study exposes the impact of context
      • trying to navigate a ‘real-life’ setting - Dallund
      • reflects the possibilities open to cancer survivors in general
      • given the context – study did not fit the randomized design from the outset
    • Seemingly paradoxical findings – WHY?
      • Salzer et al. (In Press) observes similar discrepancy
    • The questions we ask – and the way we relate to our answers
    • Our questions affect the process of rehabilitation
      • No action without a re-action (Arendt, 1958)
      • Studying the enactment of objects (praxiography)
      • Movement from a transitive perception to a intertransitive view (Mol, 2002)
    • Reality is not singular
    • Study points to awareness of social inequality in the use of internet based interventions
      • access to care
      • patients should never be left alone
    • Not clear effect of the use of internet peer-to-peer support groups
    • Rehabilitation needs – a demand for recognition
    • Cancer rehabilitation is a creative social process of change – new possibilities for life beyond illness
    • Discrepancy is not a paradox but a productive site for new knowledge
    • Continued need for interdisciplinary studies in health sciences
    • Engage the enactment of research that feeds from the differences and frictions across disciplines
    • Rehabilitation intervention – integrated approach to move away from individualized perspective of health and illness
    • Attention to the features of the intervention condition
    • Large, structured internet based interventions – multiple purposes – more professional initiation
    • Financial support:
      • IMK Foundation (grant number: 30206-147)
      • TrygFoundation (grant number: K08-05)
      • Danish Cancer Society Psychosocial Research Commitee (grant number: PP 07024)
      • Department of Psychosocial Cancer Research
    • A large and deep THANKS to the cancer survivors who took up the invitation to participate in this research
    • Thank you for your attention!