Theoretical and practical outline of the Copenhagen PACT narrative-based exercise counselling manual to promote physical activity in post-therapy cancer survivors

Abstract

Background. Sedentary behaviour and reduced exercise capacity are potential persisting effects of anti-cancer therapy that may predispose to serious health conditions. It is well-established that physical exercise may prevent some of these problems. However, the extent to which cancer survivors are able to adopt long-term physical activity habits depends largely on their motivation. Aim. This theoretical paper aims to outline how researchers and practitioners can draw from Antonovsky's salutogenetic theory and White & Epston's Narrative Therapy to develop and implement intervention efforts centered on promotion of long-term physical activity behaviour, while at the same time increasing the individual cancer survivor's sense of meaning and personal health resources. Material and methods. The Copenhagen PACT (Physical Activity after Cancer Treatment) Study targeting adoption and maintenance of regular physical activity in post-therapy cancer survivors is briefly presented including a brief review of the theoretical rationale behind the psychological component of the intervention, i.e. a narrative-based exercise counselling programme. Subsequently, particular attention is given to the core principles, different components and structure of the counselling manual including sample questions and examples of written documents that have emanated from the individual counselling sessions. Discussion. The discussion includes consideration of some methodological challenges that arise when attempting to evaluate narrative-based interventions in the context of physical activity promotion in cancer rehabilitation and survivorship care.

‘The limits of my language are the limits of my mind.

All I know is what I have words for.’

Ludwig Wittgenstein

Promoting health behaviours of cancer survivors is imperative, as both the number of survivors and their length of survival is expected to expand [1,2]. Sedentary behaviour and reduced exercise capacity are potential persisting effects of anti-cancer therapy that may predispose to serious health conditions, including risk of cardiovascular disease, suboptimal quality of life, and possibly increased risk of cancer-specific mortality [3]. It is well-established that physical exercise may prevent and/or mitigate some of these problems [4]. However, the extent to which cancer patients are able to benefit from physical exercise depends largely on their motivation and ability to adopt and sustain continuous physical activity habits [5,6].

It has been shown [7,8] that some cancer survivors increase their levels of physical activity spontaneously during the period following diagnosis, which has led researchers to the assumption that cancer diagnosis may create a teachable moment for health behaviour change [7]. However, a concept analysis of teachable moments [9] suggests that, a person most likely does not move forward spontaneously at a teachable moment. Clinician-patient interaction is pivotal to the creation of teachable moments and additional assistance and resources are likely required to facilitate health behaviour change, including an increase of physical activity.

The conception that cancer diagnosis represents an important teachable moment for deploying interventions that promote permanent behaviour change, is closely related to the notion that difficult life transitions and trauma, such as cancer, may alter the individual's self-concept insofar as it is appraised as a threat to the relationship between the body, mind and everyday life and creates a ‘biographical disruption’ [9]. Frank [10] uses the metaphor of ‘narrative wreckage’ to characterise such experience, which he claims urge people to become storytellers ‘to recover the voices that illness and its treatment have taken away’ [10]. Accordingly, findings from several qualitative studies have shown how cancer diagnosis may be accompanied by a sense of disorientation, discontinuity, disbelief and a breakdown of a coherent life history leading to a re-appraisal of personal, familial and social issues.

The author's previous research [11] has shown how supervised, group-based exercise offered to advanced disease cancer patients undergoing chemotherapy may mobilise and facilitate the restoration or ‘reauthoring’ of narrative meaning. Through exercise, cancer patients are offered the opportunity to shift position and (re)gain a sense of agency and self- reliance. Thus patients’ stories of themselves as exercising can be a powerful language for transformative experience, and turn adoption and maintenance of regular physical activity into a goal in itself [12]. However, whether and how it is possible – through counselling – to capitalise on the narrative discontinuity imposed by the cancer illness, to promote longer term physical activity behaviour in cancer survivors, remains to be examined.

The Copenhagen PACT Study

The Copenhagen ‘Physical Activity after Cancer Treatment’ (PACT) Study is a cross-scientific and multidisciplinary pragmatic randomised controlled trial study carried out from December 2007 to March 2010 at the Copenhagen University Hospital (Rigshospitalet), Denmark. The aim of the Copenhagen PACT Study was to investigate the effect of a 12-months rehabilitation programme intended to promote and sustain regular physical activity in post-therapy cancer survivors. The intervention comprised once weekly supervised facility-based high-intensity physical exercise training (1.5 h/week) combined with individual (3 × 1 hour) and in-group narrative-based exercise counselling. Report on the efficacy of the intervention, including effect on physical activity behaviour, cardiorespiratory fitness and patient reported outcomes, is submitted for publication elsewhere. Meanwhile, the purpose of the present paper is to describe the theoretical and practical framework of the exercise counselling manual.

Theoretical framework

The purpose of the counselling component of the intervention of Copenhagen PACT Study was to promote sustainable physical activity (≥ 3 times/week). In addition to substantial health benefits, the idea was that regular physical activity would have a therapeutic effect. Specifically we hypothesised that the adoption of regular physical activity would assist successful resolution of tension created by the disruptive experience of cancer by rendering the experience once again canonical, and through that bolster individual empowerment and restore a sense of biographical continuity [13]. The counselling manual pulled from Antonovsky's salutogenetic orientation [14] and White & Epston's Narrative Therapy [15] are briefly reviewed below.

Antonovsky's salutogenetic orientation

The salutogenetic orientation of Antonovsky [14] focuses attention on health generation as opposed to pathogenesis, which focuses on disease generation. The perspective includes two fundamental concepts. First, the concept of Generalized Resistance Resources, which refer to biological, material and psychosocial factors such as ego-strength, money and social support, that make is easier for people to perceive their lives as consistent, structured and understandable. Secondly, the concept of Sense of Coherence, including the components comprehensibility, manageability and meaningfulness, which refer to a person's capability to see that one can manage any situation, independent of whatever is happening in life.

It has been suggested [16] that the salutogenetic approach of Antonovsky could form a theoretical framework for individual empowerment essential to health promotion, i.e. mobilisation and development of health resources enabling people to live an active productive life feeling in control over their environment and over their personal circumstances. Thus, adapting a salutogenetic orientation in research and clinical practice means focussing attention on participants’ self-assessed health resources, and through that, improve and facilitate health literacy [17].

Narrative therapy

Narrative therapy is based on a post-modern worldview and refers to a range of social constructionist and constructivist approaches to the process of assisting people in restoring their memories, experiences, and expectations in ways that elicit information, permit change, or make experience comprehensible. The essence of narrative therapy, then, is interpreting and giving meaning to experience including trying to understand how a person's experiential reality has been socially constructed.

Narrative therapy is person-centred, and focuses on meaning instead of ‘facts’. It concentrates on a person's specific situation or existing concerns and may include interventions with other people significant to the person. In narrative therapy, the therapist elicits raw experience and then helps the client(s) retelling that experience to make it easier to articulate, understand, reconcile, and revise. The counsellor's role is to facilitate this process rather than to impose assumed expert professional knowledge about the person's motives or needs. Narrative therapists encourage a focus on the untypical as it is through the untypical that people can escape from the dominants stories that influence their lives, i.e. stories of being a victim to cancer and/or stories of being lazy and helpless. Hence, honouring everyday actions of resistance by externalising conversations is depicted by narrative therapy as a way to begin to reclaim lives. Recognising these actions as strengths can help people in the process of creating alternative stories. Accordingly, the use of specific terminology is important in narrative therapy, as it refuses to understand problems as part of people and their identity. White & Epston [15] state that once a person sees a problem as separate from the person's identity, the opportunity for change has been created. This change can take the form of behaving differently, resisting or protesting the problem, and/or negotiating the relationship with the problem in other ways.

Michael White used the term ‘absent but implicit’ to convey the understanding that whenever something is raised as a problem it always also includes the wish of and hopes for change, or as Carey et al. [18] explain it: ‘In the expression of any experience of life, there is a discernment we make between the expressed experience and other experiences that have already been given meaning and provide a contrasting backdrop, which ‘shapes’ the expression being foregrounded’.

In the light of narrative therapy, the overall aim of the PACT intervention was to present physical activity as the new 'dominant plot’ in the individual's story of self. The idea was that this new plot, which is provoked or reinforced by the cancer, would help turning the illness experience into a possibility for bringing forward potentially neglected territories of life. Thus the goal of increased physical activity behaviour was introduced as a unique outcome, i.e. an opportunity and/or invitation for the individual to create new meaning. It was assumed that through formulation of exercise goals – based on accounts of life that lie ‘outside of’ or beyond the problem story (i.e. cancer) – competence would be affirmed as a positive truth about the individual's identity.

Practical framework

Organisation

The counselling offered within the Copenhagen PACT Study was provided by a professional trained psychologist with clinical and research experience with cancer patients (JM). The counselling was delivered face-to-face over a one-year period and included three individual sessions (baseline, and after six and 12 months) and eight group-based sessions (every six weeks). During the same period of 12 months, participants were offered once weekly supervised group-based high-intensity exercise training sessions (45 planned sessions).

Principles and guidelines

The purpose of the counselling was to introduce regular physical activity as a strategy for building a preferable identity and breaking down negative identity conclusions/negative experiences. The written language was used consistently to cement different stories about the participants’ lives and their future course, i.e. to document new knowledge and practices which support the development of the new self-narrative. This practice manifested itself, e.g. when the counsellor took notes during sessions either on paper or on a white-board. The notes partially assisted the counsellor in deciding which direction the dialogue should go and were used later to write official documents (i.e. a ‘Physical Activity PACT’, a ‘Support PACT’, and a ‘PACT for the Future’).

Language used in the written documentation was straightforward and personal and content was carefully identified in order to maintain the focus on the relationships with special events and experiences that would uncover resources and stories that were contrary to an eventually dominating and problematic story [15].

The counsellor's role is to remain distant but influential in challenging clinician thinking as the expert. Success in narrative therapy and the active component has been defined as a matter of aesthetics in that the therapist, or in this case the counsellor, must be willing and able to show sensitivity to the social deconstruction and reconstruction of reality in favour of negotiation and co-construction of a preferred, less problem-saturated reality.

Individual sessions

Session 1 (Baseline): Motivation and expectations.

The first individual session involved the preliminary but decisive steps towards the co-construction of a dominating physical activity narrative for the individual, which could replace a less-preferred patient-narrative. Consequently, the session developed around the creation of a personal so-called ‘Physical Activity PACT’ in the form of a written document, which was based on the individual's own hopes and goals for sustaining physical activity, and sought to be fundamental and essential in the acknowledgement and establishment of the individual's motivation towards regular physical activity.

The session began with the counsellor expressing her thoughts about the creation of a ‘Physical Activity PACT’ but took care not to force the idea. The participant was asked whether or not he/she would desire to make such a pact, and whether or not he/she would agree to the counsellor taking notes during the conversation knowing that these notes would be used by the counsellor to draw conclusions that were mailed later on to the individual in the form of a personal ‘Physical Activity PACT’ (see Supplementary Appendix I available online at http://informahealthcare.com/doi/abs/ 10.3109/0284186X.2012.742206). Provided that the individual did not obstruct to the idea, the counsellor began to ask some – or all – of the following sample questions introducing the individual's participation in the project (i.e. The Copenhagen PACT Study including supervised and home-based physical activity) as a ‘unique event’ and highlighting potentially hidden or hitherto unexploited competences and resources.

• What did you do to prepare to take this step towards regular exercise? What preparatory steps led you to this point?

• Just before you took this step, were you about to retract? If you were, what stopped you from doing so? Can you tell me a little about that? What were the circumstances? What does this insinuate about your motives or the goals that you have set for your life?

• Drawing from your illness experience, what can you tell me that would help me to understand how you were able to take this step now?

• What have you experienced in life so far that you believe made it possible for you to do this?

• Is there anything that has hindered you from taking this step (i.e. begin to exercise regularly) sooner? What would you call this problem? How can we reduce the impact of this problem/obstacle in the future? How will you know, when the problem is diminished – what will be different?

• What expectations do you have regarding the impact of regular physical training – can you describe what you think will help you sustain your desire to exercise? What are your goals?

• How do you think that you will be able to feel the impact of regular physical activity on your daily life?

• What opportunities will regular physical activity give you vis-a-vis your relationship with others and how will it help you to move on in your life?

The idea behind the questions was to confirm and allow physical activity to be the starting point for the discovery and development of an alternative and preferred self-narrative (i.e. someone you will and can exercise regularly) in which the self is viewed as more powerful (i.e. in possessing of substantial resistance resources) than the problem (i.e. someone with a serious illness – passive, dependent, helpless). The counsellor proposed that by taking the decision to be more physically active, the individual has made an active choice to defy feelings of helplessness and loss of control in exchange for an alternative and more useful story based on the ability to plan and implement regular physical activity.

Since it was important that ‘The Physical Activity PACT’ was accessible, the counsellor ended the session by asking the participant what measures he/she wished to take to ensure that the pact would be accessible for his/her immediate viewing. A further decision was made about who should have access to the pact. In this connection, the focus was on describing the circumstances in which the document would likely be used. The participant was encouraged to speculate on the consequences of accessing the pact, i.e. what effects he/she anticipated that accessing the pact would create for his/her response to problematic circumstances and for his or her life and relationships in general.

Session 2 (after six months): Identification and recruiting of supporters and witnesses.

The goal of the second individual session, which was scheduled midway through the intervention (i.e. at six months), was to identify and commit significant members of the participant's social network, as these persons could serve as witnesses to and help establish the new self-narrative. Hence, the session began by the counsellor asking the participant to identify supporters and witnesses, e.g. persons that the individual felt had or could have had a positive influence on the individual's motivation and possibilities of sustaining regular physical activity.

The second session included some or all of the following samples questions:

• Is anyone contributing to this project?

• How do you feel that these people you have identified support you?

• What has the support of this/these person(s) brought to your life?

• Amongst all of the people that know you, who would be most surprised that you are able to exercise regularly? What could they have seen you do previously that might have enabled them to predict that you could take such a step at this point in your life?

• Is there anyone who could prevent you from sustaining regular exercise? How will you prevent these people from convincing you in any way?

• Who is your role model? What would your role model do – thinking about you and your project and the path to success for you?

On this basis, and to commit these supporters/ witnesses, the counsellor wrote a ‘Support PACT’ on behalf of the individual participant. The Support PACT took the the form of an official support letter or letter of invitation including affirmation of visible changes, support for new/continued desires and options. The Support PACT was signed by the participant and – if the participant agreed to distribute it – also signed by the designated support persons (see Supplementary Appendix II available online at http://informahealthcare.com/doi/abs/10.3109/0284186X.2012.742206).

Session 3 (after 12 months): Confirmation of a new reality and making the declaration.

Towards the end of the intervention period, the counselling focused on the effect of the individual participant's experiences throughout the previous 12 months and from which new stories/self-descriptions was triggered. These experiences were summarised in a declaration, i.e. a well-being promise that had the aim partially to retain what has been learned and partially to ‘oblige’ the individual and those around him to the actions that underlie the new story (see Supplementary Appendix III available online at http://informahealthcare.com/doi/abs/10.3109/0284186X.2012.742206).

The following questions were included in third and last individual session:

• What reaction do you and your supporters/witnesses (i.e. family and friends) have to how your participation in the project has impacted you the way it has? Is it a positive or negative development? Is there anything that you wish to increase or decrease [within the context of regular exercise]?

• What do you think that your life would have been like today if you had not participated in the project/training?

• What new conclusions can you draw from what you have achieved?

• What do these discoveries say about what you desire in life?

In-group sessions (bi-monthly)

The aim of the in-group counselling sessions, which were delivered bi-monthly (i.e. each individual would participate six times in total) was to create unity amongst new and more experienced participants, in such a way that the new participants would become inspired and motivated by the more experienced participants, who in return would receive recognition and self-confidence in their status as more experienced members. In this regard, focus was placed on articulating any positive experiences with physical training and other experiences in which the individual defied any 'bad excuses’ or lack of motivation and commitment. The idea was that through this practice, persons who were ‘trapped’ by the same oppressive narratives would benefit mutually from their new knowledge.

The process of the in-group counselling was the same for all sessions. Each session opened with an introduction and welcome to the new participants, after which there is a brief review of these newcomers’ newly established ‘Physical Activity PACTs’. This was followed by a short presentation and mutual discussion of a theme (concept or theory) in relation to change and maintenance of physical activity behaviour (e.g. self-efficacy, goal setting). Finally, certificates in the form of the ‘PACT for the Future’ were handed out to members who had completed the last individual counselling session and who were approaching the end of their intervention period.

Discussion

The purpose of this paper was to outline the theoretical and practical framework of a narrative-based counselling manual to promote regular physical activity behaviour in cancer survivors.

According to the post-modern position which constitutes the basis for narrative therapy, the process of therapeutic re-authoring of personal narratives changes lives, problems, and identities because personal narratives are constitutive of identity. None the less, ‘true’ narrative therapists may raise the objection that this programme is too goal-oriented, too prescriptive, i.e. that the concentration on physical activity prevented the search for and the negotiation of more than one reality. However, the questions asked of the participants, although focused on adoption of physical activity, were not intended to provide particular answers. Thus the goal of the questions was to create a therapeutic space in which the participant would experience choice rather than ‘settled certainties’. Thus the therapist was very aware to make up meanings in interaction with the participant, not imposing truths about (motivation for) physical activity and/or exercise self-efficacy.

Accordingly, while evidence of the potential effect of physical activity on cancer mortality is accumulating, the concept of the intervention was not to let the risk of cancer recurrence or any other health risk (e.g. cardiovascular disease, diabetes, etc.) dominate the argument for physical training. Instead the aim of the intervention was to strengthen the individual's inner motivation for physical training by acknowledging that the experience of disruption and accompanying search for meaning through story-telling, provoked by cancer, may be said to provide unique resources for re-authoring and (re)negotiation of (a preferred) identity. Thus, although we focused on behavioural effects, the narrative intervention in the Copenhagen PACT Study, was essentially cognitive as the intervention was sought to depart from and/or contribute to change through memory and thought including the beliefs the person holds regarding his or her power to affect situations.

As such, the psychological intervention in the Copenhagen PACT study, although applying a different theoretical perspective, is in accordance with existing social cognitive-based models for understanding and promoting physical activity in cancer survivors. In fact several studies, both quantitative and qualitative, have shown that exercise behaviour is influenced by self-efficacy directly and indirectly, via goals, outcome expectations, and social support [6]. What makes the Copenhagen PACT counselling programme unique (and thus different from conventional exercise promotion strategies) is the assumption that physical activity maintenance first and foremost is a social process, and that interventions and the changes they bring have to be accommodated within the patient's biography [19]. This assumption is supported by previous qualitative findings from the Copenhagen PACT study, indicating that cancer survivors experience physical activity maintenance as a way to search, find and conserve meaning in the illness experience [12].

It is obvious that further studies are needed to demonstrate the feasibility and effectiveness of narrative-based counselling in to promote physical activity behaviour cancer survivors. To this author's knowledge, a recent study by Rodríguez Vega et al. [20] is the first and – to date – sole randomised, controlled clinical trial to evaluate the adaption of narrative therapy in the oncology field. Their study suggests that narrative therapy used in combination with antidepressants is superior to antidepressants plus usual care in improving functioning dimensions of quality of life in cancer survivors who met depressions diagnostic criteria according to DSM-IV-TR. Moreover Petersen et al. [21] published the rationale and description of a three-session narrative-expressive therapy programme designed to address the long-term, underlying stress and to prevent PTSD in cancer patients, yet without including the meaning-making potential of health behaviour changes.

However, despite the apparent appeal of narrative therapy as a therapeutic modality, research on its utility in general is sparse [22]. It may be argued that scientific and narrative ways of knowing are fundamentally different [23]. Where science concerns itself with the establishment of truth, narrative's concern is to endow experience with meaning based on the idea that there are no essential truths and that realities are socially constructed and constituted through language. Hence, it has been argued that narrative traditionally may be ‘too humanities-oriented to be considered a part of scientific inquiry’, and as an intervention technique is so utterly and unapologetically subjective that it will never be able to or interested in meeting biomedical standards of scientific rigor [24].

However, clinical decisions and methods of patient care are based on much more than just the results of controlled experiments [25]. Hence, although narrative therapists should always make sure not to get caught up in pathologising or normative thinking, it should be legitimate and possible for narrative oriented researchers to provide evidence of their efforts. In the case of understanding phenomena created through interaction and communication such as meaning-making, this is likely to be best accomplished by analysing audio- and video-recorded clinician-patient interactions and pairing these analyses with data on subsequent patient outcomes. To fulfill this potential, qualitative and quantitative research strategies must be thought of as being complementary rather than conflicting. However, substantial methodological research is needed to find the best ways to examine and report changes in narrative-based interventions in order to preserve the richness and complexity of therapeutic transformation.

In conclusion, while based on principles that are congruent with context-sensitive research methodologies that deemphasise generalisability [22], cancer survivorship researchers should not preclude themselves from using narrative approaches. Specifically, clinicians and researchers should continue to pursue the development and evaluations of intervention that integrate health behaviour promotion with the search for meaning by capitalising on the notion that cancer causes a major disruption in life which mobilises narrative's potent constructive capacity, allowing a reconstruction of self and the self's place in the world.

Acknowledgements

The Copenhagen PACT study was supported by a grant from the Velux Foundation. The project also received funding from the Danish Cancer Society. Special thanks are extended to Ellen Boesen for valuable supervision in the development of the counselling manual.

Declaration of interest: The author report no conflicts of interest. The author alone is responsible for the content and writing of the paper.