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Abstract
Introduction Adolescents and young adults (AYA) with cancer undergo physical transformations due to disease and treatments occurring alongside puberty and adolescence. Although physical activity is recommended for its benefits, its practice among AYA with cancer remains insufficient. The aim of the Éducation Thérapeutique et Activité Physique: Engagement des Adolescents et Jeunes Adultes atteints de cancer study is to identify the evolution of AYA with cancer medical knowledge and powers (power to act, to express oneself) over life and cancer care, and their role in commitment in adapted physical activity (APA) and therapeutic patient education during and after oncological treatments.
Methods and analysis This prospective mixed methods monocentre study will be conducted in a French comprehensive cancer centre. Observations will be conducted two times a week during medical consultations, APA interventions and therapeutic education sessions for AYA with cancer. Semidirective interviews will involve 70 participants, including AYA with cancer aged 15–25, health professionals, APA teachers and parents. Quantitative data will be collected on AYA’s social characteristics and participation in physical activity intervention and therapeutic education sessions. A correspondence factor analysis will supplement inductive analysis of ethnographic qualitative data, involving patient coresearchers. The results will help to improve the understanding of AYAs’ medical knowledge and powers, their commitment in physical activity and to develop strategies to increase their participation.
Ethics and dissemination This study complies with reference methodology MR004 of the French National Data Protection Authority and was registered by the Data Protection Officer of the Leon Berard Cancer Center on the activity registry of the institution (Ref. N°R201-004-259; 5 July 2022). Ethics approval has been obtained from the Centre Léon Bérard ethics board (Ref. N°2022–006; 20 July 2022). Oral informed consent will be obtained from all participants before data collection. The results of this study will be published in peer-reviewed scientific journals, national and international conferences.
- ONCOLOGY
- QUALITATIVE RESEARCH
- Quality of Life
- Adolescent
- Health Education
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STRENGTHS AND LIMITATIONS OF THIS STUDY
The study will use a mixed-methods approach with observations, semistructured interviews and quantitative data.
Interviews conducted at different stages of cancer care will enable a longitudinal approach that will yield rich and substantive information on experiences and changes in physical activity commitment.
Analyses of Éducation Thérapeutique et Activité Physique: Engagement des Adolescents et Jeunes Adultes atteints de cancer will be conducted and discussed with patient coresearchers who are members of ALLIANCE collective (ALLIANCE Collective to develop collaborative research with adolescents and young adults to improve physical activity commitment and quality of life during and after cancer treatment. Project funded by the Fondation de France (2023-2025)).
The study involves only one cancer treatment centre, which could restrict representativeness of results.
Sample size (70 participants) may limit generalisability of results, although data saturation is mentioned as a stopping criterion.
Introduction
Since the 1980s, adolescents and young adults (AYA) with cancer have been identified as a distinct clinical population1 due to their intermediary position between paediatric and adult medicine. Starting from 1990s, many care programmes have been dedicated to them, and the AYA with cancer group is now defined as worldwide definition, particularly concerning age ranging between 15 and 45 years.2 Such schemes developed later in France under the impetus of the second cancer plan for 2009–2013 for patients aged 15–25. Every year, around 1.2 million new cases of invasive cancer are diagnosed among patients of this age group.3 In France, around 2300 new cases of cancer are diagnosed among the 7.7 million AYAs.4 The 5-year survival rate is around 88% for all types of cancer combined (ibid.). These young adults are going through a phase of maturation, building their individual identity and undergoing physical, psychological and social transformations. The onset of cancer during this period of schooling choice and gradual construction of independence disrupts the process of empowerment and maturation.5–8 The bodies of AYA with cancer undergo physical transformations due to disease and treatments occurring alongside growth and developmental modifications related to puberty and adolescence (psychological and social transformations).9–11 Their low levels of empowerment in healthcare are associated with low levels of autonomy and quality of life,12 which is severely impaired during and after oncological treatments.2 13 In this context, programmes dedicated to therapeutic patient education and adapted physical activity (APA) intended to develop autonomy of chronically ill patients in the ongoing management of their state of health have been deployed at the heart of healthcare.14 APA has been widely developed in oncology, with proven benefits against comorbidities, treatment side effects and broadly speaking on quality of life during and after cancer treatment.15–17 It plays a part in risk prevention of developing a second cancer in adulthood, as studies have shown that AYA with cancer are six times more likely to develop a second primary cancer than their peers.18 19
In France, the development of APA in the care of chronically ill patients has been widely encouraged by public action, particularly since 2016 with the law on modernisation of French healthcare system (Law number 2016–41). It provides ordonnance of APA to the pathology, physical capacities and medical risk of patients with long-term illness. For AYA with cancer, regular physical activity is recommended (aged <18 years: Practice at least 60 min of moderate-intensity endurance activity per day, and sustained-intensity endurance activity 3 days a week. Aged >18 years: Practice at least 150 min of moderate-intensity endurance activity per week, and muscle-strengthening exercises involving the major muscle groups at least 2 days a week), and recommendations have been formulated for effort intensity and which kind of physical activity (cardiorespiratory and muscle strengthening) and desired objectives.20 21 However, several studies in AYA with cancer have found low physical activity and decreased motivation for sport.18 22–26 A systematic review on barriers and facilitators to physical activity participation for children and AYA with cancer highlighted fatigue and psychological factors as the main barriers to practice.27 These results need to be supplemented with ethnographic qualitative investigations of the mechanisms in place that facilitate or hinder AYAs’ with cancer engagement in physical activity, in order to propose appropriate strategies to encourage practice. In this context, the Éducation Thérapeutique et Activité Physique: Engagement des Adolescents et Jeunes Adultes atteints de cancer (ETAPE-AJA) study assumes the existence of different determinants of participation in APA and therapeutic patient education during oncological treatments and their effects on patients’ longer term commitment. Although physical activity is recommended for its benefits on comorbidities, treatment side effects and quality of life while therapeutic patient education are recommended to empower patients, physical activity and autonomy remain insufficient for AYAs with cancer. The main goal is to improve our understanding of the evolution of AYA with cancer medical knowledge and powers (power to act, to express oneself) over life and cancer care, and their role in commitment and non-commitment in APA and therapeutic patient education during oncological treatments and in postoncological treatments. Secondary goal is to identify key moments in trajectories of illness for commitment and non-commitment in APA and therapeutic patient education during oncological treatments and postoncological treatments.
Methods and analysis
Study design
ETAPE-AJA is a sociological prospective mixed-methods monocenter study conducted in the Léon Bérard Comprehensive Cancer Center and the Institut d’Hématologie et d’Oncologie Pédiatrique, Lyon, France. It will use mixed methods with ethnographic qualitative (observations supplemented by semidirective interviews) and quantitative (correspondence factor analysis with quantifying participation in APA and therapeutic patient education and data on AYA’s social characteristics) methods. In addition, it will use collaborative methods with stakeholders to identify the most favourable moments in AYAs’ illness cancer care for commitment and non-commitment in APA. The mixed methods approach is relevant in this context, as it will be carried out independently and complement each other, making it possible, when integrating qualitative and quantitative results, to identify AYAs’ with cancer medical knowledge and powers, and their role in physical activity commitment.28
The quantitative data including on APA and therapeutic patient education sessions will be carried out on hospitalised AYA with cancer at Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique. In these institutions, APA treatment is free of charge and is introduced early as possible after cancer diagnosis at the start of oncological treatments, by an APA teacher. Patients can practice APA sessions (yoga, weight training, table tennis, stretching, archery, soccer, boxing …) with different modalities (in bedroom, in protected sector, in the hospital gym, by videoconference), at any stage in cancer care with a certificate of aptitude for APA delivered by an oncologist. The quantitative data will be collected on these different modalities and temporalities (during hospitalisation, between treatment cycle, postcancer period) of practice from the data records (number of APA assessments and sessions, modalities, temporalities, APA assessments carried out as part of a clinical trial, …) kept by the APA teachers, trained in therapeutic patient education. In addition, we will collect AYAs’ social characteristics (age, sex, parent’ socioeconomic and professional category, school and family situation, place of residence, …) while hospitalised during our study, in order to characterise the different patient profiles according to their cancer care and APA participation.
Study population
Inclusion criteria for patients
Participating patients will have to meet all of the following eligibility criteria: (1) AYAs aged 15–25 years; (2) diagnosed with cancer (any type); (3) being able to speak and understand French; (4) managed in the AYA with cancer Unit at the Centre Léon Bérard or the Institut d’Hématologie et d’Oncologie Pédiatrique in Lyon (36 patients/year); (5) having a medical clearance of no contraindications to physical activity; (6) informed consent given orally.
Exclusion criteria for patients
Patients will not be eligible in at least one of the following cases: (1) end-of-life treatment; (2) postcancer period at the time of enrolment; (3) being involved in the development of the interview guides in collaboration with AYA with cancer and social science researchers (member of the ALLIANCE collective).
Inclusion criteria for professionals
The inclusion criteria for participating health and APA teachers are as follows: (1) employees of the Centre Léon Bérard or the Institut d’Hématologie et d’Oncologie Pédiatrique in Lyon; (2) involved in AYA with cancer care; (3) trained in therapeutic patient education; (4) voluntary participation in this study.
Exclusion criteria for professionals
Professionals being involved in the development of the interview guides in collaboration with AYA with cancer and social science researchers (member of the ALLIANCE collective) will not be eligible.
Inclusion criteria for parents
There is one inclusion criterion: parents of an AYA included in the ETAPE-AJA study.
Exclusion criteria for parents
There are no exclusion criteria for parents.
Recruitment
Participants will be recruited during their oncological treatments (As eligibility criteria gather several types of cancer, treatments can be numerous so we haven’t listed all of them but all are cancer treatments) at the AYA with cancer Unit at the Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique, Lyon, France. Since the construction of this Unit in 2014, young patients aged 15–30 have the option to choose between receiving care alongside adults at the Centre Léon Bérard or receiving care within the Institut d’Hématologie et d’Oncologie Pédiatrique. This system aims to enhance the management, monitoring and support of AYA with cancer. It is through this scheme that APA was implemented by a team of 9 APA teachers at the Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique using different methods (hospitalisation, outpatient care, protected sector, videoconference).
Eligible patients will be identified during AYA with cancer interdisciplinary consultation meetings (Meetings during which patient care is discussed by a multidisciplinary team of health professionals (doctors, coordination nurses, etc), medical consultations and/or APA sessions. Once eligibility has been confirmed, a sociologist will distribute the information sheet (an additional information informed consent form will be distributed to parents/legal guardians of minors patients), then explain the aims and study protocol to eligible patients (T0). Participants will be reminded that they can withdraw from the study at any time. For health professionals and APA teachers, representativeness with profession will be taken into account.
Sample size estimate
We estimated that 45 participants, that is, 25 AYA with cancer and 20 health professionals, APA teachers and parents, will be recruited for the qualitative analysis. Recruitment will continue until data saturation is reached, that is, until the new data are redundant, no longer teach the investigator anything and contradict his analytical framework.29 30 For the quantitative analysis, we estimated that quantitative data will be collected on 72 AYA hospitalised with cancer hospitalised at the Centre Léon Bérard or the Institut d’Hématologie et d’Oncologie Pédiatrique in Lyon (36 patients/year) during the study.
Methodology
ETAPE-AJA is a monocentric study (see figure 1), which will be carried out at the Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique. Observations (2 days/week for 2 years) made at close quarters with patients, health professionals, APA teachers and parents (space for leisure, care, meetings). APA and therapeutic education facilities (medical consultations, therapeutic education patient sessions, etc) will be performed in these structures. Throughout the investigation, we will record everything observed in a field journal, from patients’ daily moments, workspaces of professionals to medical consultations and APA and therapeutic patient education sessions.
Flowchart of the ETAPE-AJA study, France (original flowchart). AYA, adolescents and young adults; ETAPE-AJA, Éducation Thérapeutique et Activité Physique: Engagement des Adolescents et Jeunes Adultes atteints de cancer.
Semistructured interviews will be conducted with patients (approximately 25), parents of AYA with cancer (approximately 5) and health and APA teachers (approximately 15). First interview will be carried out with AYAs during their oncological treatments (6 weeks to several months)(T1). Patients will be free to choose the time during their hospitalisation when they feel ‘ready’ to participate. These experience and life story interviews31 will enable patients to express themselves spontaneously about their illness, healthcare and practices that make sense in their lives, in a temporal approach that distinguishes past, biographical break, current illness management and projection into the future. They will explore in depth the participants’ body image perception and their relationships with the people involved in their cancer care. A second interview will be conducted among the interviewed AYA with cancer, 1 year after their inclusion in the study (T2). For parents of an AYA included in the ETAPE-AJA study, an information note will be distributed inviting them to take part in an interview. This interview will be carried out during their child oncological treatment (6 weeks to several months) (T1). Interviews with health professionals and APA teachers will be carried out 1 year after the first AYAs are included in the study (T2). This time frame should enable the investigating researcher (CB), to identify professionals at the cancer centre involved in the AYAs’ cancer care, who will be interviewed. These interviews will allow us to increase the depth of our knowledge on APA and therapeutic patient education roles in AYA’s cancer care, and impact of parents, health professionals and APA teachers on AYAs commitment in these devices. The triangulation of interviews (patients, professionals and parents) will enable us to increase the depth of our knowledge of AYAs’ cancer care.
The interview guides have been drawn up in collaboration with the ALLIANCE collective constituted of seven AYAs with cancer, one health professional, two APA teachers and three researchers (ALLIANCE collective meets in shared reflection meetings organised every two months. Fifteen meetings are scheduled between May 2023 and February 2025). It will focus on sport, physical education and physical activity.
All interviews will be conducted face-to-face (Unless contraindicated by the patient, who authorises one of the parents to remain during the interview) and recorded with prior agreement of candidates for later analysis. Informed verbal consent will be obtained before each interview. The flowchart of the study is shown in figure 1.
Patient and public involvement
The ETAPE-AJA study relies on ALLIANCE collective to involve the patients concerned in discussions with researchers and professionals.32 AYA with cancer, health professionals, APA teachers and sociologists were involved from the outset of the project. The AYA with cancer recruited to ALLIANCE have received specific training for the project and are, therefore, involved as coresearchers. Meetings will be organised throughout the project to enable the coresearchers to participate in drawing up interview guides, interpreting and disseminating the results. However, they would not be involved in data collection. Patients and professionals from ALLIANCE collective can not be included in ETAPE-AJA study. The participation of patients, professionals and researchers will be evaluated at the end of the project by a ethnographic qualitative research (observation and interviews) as part of the ALLIANCE study.
The final results will be distributed to the participants included in ETAPE-AJA at the end of the study if they wish.
Data collection
Sociodemographic and clinical data
Sociodemographic and clinical data, including gender, year of birth, living situation (pupil, student, working, unemployed), school or work situation, parents’ socioprofessional category, place of residence, lifestyle (physical and/or sporting activities), will be collected during interviews with patients. They will only be used for descriptive purposes. All clinical data relating to the illness and cancer care (pathology, treatments, recurrence(s)) will be extracted from the participants’ electronic medical records.
Adapted physical activity
The quantitative data will include APA and therapeutic patient education sessions carried out on all hospitalised AYA with cancer at Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique during the 2-year ethnographic observation, that is, approximately 72 patients. We will collect data on different temporalities (during hospitalisation, between treatment cycle, postcancer period) and modalities (in bedroom, in protected sector, in the hospital gym, by videoconference) of practice from the data records (number of APA assessments and sessions, modalities, temporalities, APA assessments carried out as part of a clinical trial, …) kept by the APA teachers. In addition, we will collect AYAs’ social characteristics (age, sex, parent’ socioeconomic and professional category, school and family situation, place of residence, …) while hospitalised in order to characterise the different patient profiles according to their cancer care and APA participation.
Ethnographic observation
Ethnographic observations, whether in a participatory or non-participatory position, will take place over the long term, from Monday to Friday. We plan for two observation days per week, over 100 days of observation. Conducted in close proximity to the daily lives of AYAs, they will foster better acceptance of the investigating researcher (CB) and a more nuanced understanding of interactions. These observations will occur during APA sessions at the hospital gym when AYA participants are present, whether in individual or group sessions, including afternoon videoconference sessions. Investigating researcher will accompany APA teachers in their daily activities to observe the presentation of the APA programme to AYA, the negotiation strategies to encourage their participation in APA, the in-room sessions and interdisciplinary coordination meetings. These central observation spaces will be complemented by everyday moments for both patients and healthcare professionals (leisure spaces, care activities, meetings, therapeutic education facilities). Promotional materials for the APA programme (brochure presentation, posters, etc) will also be collected and included in the analysis. During observations, field notes will be taken and recorded in a journal, following a structured observation protocol aligned with the research objectives.33 Since on-the-spot note-taking may not always be feasible, observations can be transcribed later on the same day. Handwritten notes will be digitised to facilitate data processing. The investigating researcher (CB) will not wear hospital attire and will be introduced to participants as a researcher. The researcher’s prolonged commitment in the field and persistent observations over 2 years is particularly important in producing the rich descriptions and thick data, needed to ensure the validity of our qualitative methodology.34
Interviews
The semistructured interviews will be conducted using interview guides that have been drawn up in collaboration with the ALLIANCE collective (see tables 1–4). They are organised into major themes, such as lifetime, relationship with physical activity and sport or cancer care. The question stem format aims to keep the interview relatively standardised. The interview will be tested in order to adjust these major themes, while paying attention to negative cases. Interviews should last between 30 min and 60 min. They will be recorded using a voice recorder with the prior agreement of respondents. The interviews will be transcribed to a computer in their ‘entirety and in a literal/verbatim manner, that is, respecting the form of the discourse’35 to facilitate their processing.
The patient interview guide (T1): topic areas and key questions
The patient interview guide (T2): topic areas and key questions
The professional interview guide: topic areas and key questions
The parent’s interview guide: topic areas and key questions
Data analysis
An inductive approach will be employed, meaning that a preliminary analysis of the data will be conducted from the initial observations to guide and adjust observations throughout the field investigation.29 Qualitative data corpus will undergo both manual and computer-assisted thematic discourse analysis (using analysis grids, annotations and coding).36 Identification of codes and thematic categories will be guided by research objectives and additional information that the category brings to understanding the interviewees’ experience. The data will be broken down into extracts, which will be categorised into various themes in order to identify elements relating to patients’ commitment in healthcare systems. This category’s coding system will be shared with the other coinvestigators to improve the validity and certainty of the results. They will be analysed using IRaMuTeQ (IRaMuTeQ is an open-source program built with open-source software. It is based on R statistical software (http://www.r-project.org and the Python language http://www.python.org software. This will enable us to carry out automatic lexicometric analyses to ‘identify the regularities, specificities and correlations of graphic forms’ of corpus.37 We will focus on examining thematic categories’ influence based on different patients or situations. Special attention will be given to compare recurrences and negative cases to ensure analysis rigour and reliability.
All statistical analyses will be performed on an exploratory basis on all data from study subject. Given the limited sample size, non-parametric tests will be performed. Quantitative data will be presented using the number of observations, mean, SD or median. Qualitative data from statistical analysis will be presented using their frequencies and percentages. For both types of data, the number of missing data will be presented if necessary. The descriptive statistical analysis will enable us to measure the influence of social factors (age, sex, parent’ socio-economic and professional category, school and family situation, place of residence, …) on commitment in physical activity, in order to verify our hypotheses. Quantitative data will be processed using the Jamovi software.
These qualitative and quantitative analyses will be crossed. This triangulation of data from different methods will enable us to increase the depth of the results. The analyses will be conducted and discussed with the ALLIANCE collective to improve our understanding of AYAs’ with cancer medical knowledge and powers over life and cancer care, and their role in commitment and non-commitment in APA and therapeutic patient education during oncological treatments and postoncological treatments.
Considerations on the researcher’s position
As part of this study, it is essential for the researchers to recognise their role in the research process. The research team includes experts in qualitative methods (CB and CP) and in cancer care (OP, AB, RM, PM-B and BF). A postdoctoral researcher experienced in qualitative methods and research investigator (CB) will conduct the observations and interviews and undertake the data analysis. Despite the non-interventional but visible stance to the participants by this researcher, they will strive to maintain a neutral and discreet posture to minimise their impact on the observed actions.38 38 The investigator’s presence at Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique over the long term could become a non-presence39 and limit its impact on course of interactions in healthcare, APA and therapeutic patient education sessions observed. Due to their professionals’ activities, the members of the ALLIANCE collective may be in contact with enrolled patients, but only in the context of their care.
Ethical issues and dissemination
This study complies with reference methodology MR004 of the French National Data Protection Authority and was registered by the Data Protection Officer of the Leon Berard Cancer Center on the activity registry of the institution (Ref. N°R201-004-259; 5 July 2022). Ethics approval has been obtained from the Centre Léon Bérard ethics board (Ref. N°2022–006; 20 July 2022). Patients will be informed and oral consent will be obtained from all participants (as well as from parents for minor patients) prior to data collection, governed by the European General Data Protection Regulation (2016). All collected data (qualitative and quantitative) will be pseudonymised by a researcher (CB). The results of this study will be published in peer-reviewed scientific journals and national and international conferences.
Discussion
The proposed study aims to examine APA and therapeutic patient education as a social experience, enabling skills development that can be used to improve patients’ commitment in these schemes and experience of cancer care. This mixed methods approach, made at close quarters with patients, health professionals, APA teachers and parents, will enable to gain more detailed understanding participation by focusing on what people say and how they tell their stories. It will enable us to compare the observable reality with what the interviewees have to say, that is, to grasp reflections and discourse in situation. This is particularly important to identify the evolution of AYA with cancer medical knowledge and powers (power to act, to express oneself) over life and cancer care, and their role in commitment and non-commitment in APA and therapeutic patient education during oncological treatments and postoncological treatments. At Centre Léon Bérard and the Institut d’Hématologie et d’Oncologie Pédiatrique, APA treatment is provided by APA teachers with bachelor’s and master’s degree in APA, and are trained in therapeutic patient education. Teaching physical activity is at the heart of their profession. Physical activities, conceived within a biomedical framework, are frequently thought of as a tool for physiological improvement or even support for compliance.40 The aim is not to just get patients exercising, but to enable them to develop skills that can be reused in other contexts.41 APA and therapeutic patient education are integrated into the management of AYA with cancer and can both be inserted into their specific intervention. By using physical sports or artistic activities as a teaching tool, APA is at the interface between care, health and living with the disease. APA is part of a holistic approach to the bio-psycho-social dimensions.42 It contributes to improve well-being and quality of life, encourages social and cultural participation and enables preservation and development of autonomy.43 Additionally, physical sports or artistic activities are means of social participation that serves as reference point for patients who used to be sportsmen and women, helping to preserve their identity during this period of weakening and means of planning social participation in postcancer period. APA is based on social practices that can be meaningful for patients outside and beyond the scope of oncological treatments.
Regular physical activity for AYA with cancer is widely recommended. However, several studies have found low levels of physical activity and decreased motivation for sport in this population.22 24–27 44 These results need to be supplemented with ethnographic qualitative methods to understand the emergence of these barriers, and all the stages in the processes that lead to their rising. In this context, the ETAPE-AJA study will improve our understanding of the evolution of medical knowledge and powers over life and cancer care, drawing in particular on the experience of APA and therapeutic patient education of AYA with cancer; and to propose appropriate strategies to encourage young people to take up physical activity. These mechanisms will be explored in greater depth thanks to the mixed methods used (ethnographic qualitative, quantitative and collaborative) and will allow to capture the bodily and social experiences of all the stakeholders (patients, hospital professionals, APA teachers, parents, etc) that cannot be observed in the field and that are usually beyond the reach of health professionals and researchers alike.45
During their cancer care, patients develop medical knowledge and skills from experience of cancer care as well as the repercussions of these issues on their personal lives and those of their loved ones.46 In addition to the illness experiential skills, the questions asked during the interviews will enable us to understand the medical knowledge and powers (power to act, to express oneself) built up by patients, particularly with regard to treatments and lifestyles. Drawing inspiration from the sociology of translation,47 we will study the effects of ‘non-medicalised’ spheres of socialisation and ‘medicalised’ interactions on skills constructed by AYA with cancer. Faced with illness, individuals adapt, react and put in place diverse and unevenly distributed action logics.48 We assume that the plurality of their skills is likely to influence their rationale for action, and, in particular, their commitment to APA.
Then, we want to study the AJA’s illness trajectory, from the physiological development of the illness, to the organisation of the work deployed to follow this course, which leads to new skills in patients.49 The illness trajectory allows us to understand not only the multiple temporalities within which the actors evolve but also the structural context at the origin of the AYA with cancer commitment to APA practice. We will examine the impact of social characteristics (age, sex, parents’ socioeconomic and professional category, school and family situation, etc) and the illness trajectory (time in the cancer care, breaks in relation to the progression of the disease, impact on learning paths and professional career entry, on family life, etc) on the AYA’s compliance with APA, at the time of oncological treatments and in postoncological treatments. Various studies have shown that commitment to physical activities—but not only—changes as a function of life and cancer care.50 51
We decided to study the way in which bodily and social experience in APA enables AYA with cancer to develop new powers of action, in service of their participation in cancer care and biographical reconstruction, enabling a projection into their life course. We are interested in the construction of the APA practitioner’s career,52–54 that is, when physical practice continues beyond the hospital medical devices we observe and is inscribed in the world of physical activity. This means that they acquire a position as a practitioner of (adapted) physical activity position and, at the same time, it objectifies an evolving relationship with the body and physical activity. In this respect, we are looking at how APA can provide support for participation and the development of autonomy, conditions for a commitment to sustainable practice that goes beyond medical care and therapeutic patient education, by creating links with the practitioner career of a sports and/or APA. We will be looking at how this career can intersect with the illness trajectory; but also, the way in which this career can lead patients to renew their interest in physical activity, or even lead those who did not practice before the illness to become involved in APA beyond oncological treatments.52
The first challenge we need to overcome is that ETAPE-AJA study concerns only one cancer treatment centre, with a limited sample of the participants in interviews (twice 25 patients 1 year apart; 20 health professionals, APA teachers and parents). To address the limitations of present study, the recruitment will continue until data saturation is reached (approximately 70 interviews).
Ethics statements
Patient consent for publication
Acknowledgments
The authors would like to thank the Fondation ARC pour la recherche sur le cancer and the Fondation de France for the fundings.
References
Footnotes
Contributors CB, CP, OP and RM designed the trial and obtained funding. CB, OP, CP and RM developed the study protocol. AB, PM-B and BF brought their medical expertise. CB and OP fulfilled administrative procedures for this project. CB and OP wrote this manuscript. All the authors reviewed and contributed to the final version of the manuscript. The guarantor of the study is CB; accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding The study was supported by the Fondation ARC pour la recherche sur le cancer (No. ARCPDF12021020003342) and by the Fondation de France (No. 00135816/PR-152481).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer-reviewed.