“You can be cured, but cancer never leaves you behind”: an interdisciplinary approach into the embodied cancer experiences among adult Colombian childhood/adolescent cancer survivors

Abstract

Purpose

Childhood or adolescent cancer survivors (CACS) are an understudied population in Colombia and, in general, in Central and South America. Worldwide, studies typically focus on high-income settings while approaching CACS’ experiences from a biomedical or psychological perspective. However, both perspectives miss an important aspect of survivorship after childhood or adolescent cancer: the affected individual’s subjective experiences of having a disabled body. This qualitative study aimed to explore the embodied experiences of Colombian adults who survived cancer during their childhood or adolescence to better understand how CACS relate to their altered body and world.

Methods

By integrating phenomenological insights and conducting comprehensive life-story interviews, we explored the various ways in which survivors’ cancer experiences affect their bodily sense of self—from the acute phase of the disease until well into adulthood. A total of ten life-stories interviews and one focus group were carried out with seven CACS. All participants were survivors of a different type of childhood/adolescent cancer. The results were analyzed thematically, focusing on the embodied aspects of participants’ experiences.

Results

We developed three main themes regarding the embodied cancer experience among participating CACS: Firstly, participants’ body changes because of the cancer and its treatment, which makes them aware of their body. Secondly, they adapt to this experience in different bodily ways. Finally, they carry bodily traces of their cancer experience in the present as well as into the future.

Conclusions

The CACS participating in this study report that their experience with cancer has been embodied throughout their lives, changing their sense of their body and how they relate to it, and leaving traces into the present and their imagined future.

Keywords:

• cancer survivorship
• childhood/adolescent cancer
• embodiment
• life stories
• phenomenology

Introduction

Coping with the physical, emotional, and social changes of childhood and adolescence while dealing with a life-threatening illness often causes distress that affects physical, psychological and social well-being during the acute phase of treatment and later in adulthood.^1,2 In Colombia, a middle-income country, childhood and adolescent cancer represents around 3% of new cancer cases.³ As in other Latin American countries, the number of childhood/adolescent cancer survivors (CACS) has been rapidly growing,⁴ mainly due to the implementation of multimodal therapeutic regimes and health policies aimed at reducing treatment abandonment.^3,5 Nevertheless, current survival probabilities are below high-income countries.^6,7 The prevalence of health and other problems among CACS in Colombia is undocumented, due to a lack of standardized follow-ups or surveillance programs.⁸

CACS’ experiences of survivorship have been mainly explored from biomedical and psychological perspectives in high-income settings.^9–13 Research conducted in childhood cancer survivorship cohorts demonstrates that CACS are at higher risk of experiencing late adverse events such as cardiotoxicity and osteoporosis, among others,^14–16 and psychological consequences that significantly affect early lifestyle choices, such as depression, and fear.^17,18

Nevertheless, both approaches miss an important aspect of survivorship after childhood or adolescent cancer: the affected individual’s subjective experiences of having an ill and/or disabled body.^19–21 Indeed, the biomedical approach considers disease as a biological dysfunction, perceiving the body as if it were an organic machine.²² Meanwhile, the psychological approach views the subjective experience as disembodied, dealing solely with the psyche.²³ Attending to the embodied experiences of CACS can provide a rich account of an individual’s essential structures of being in the world, which is commonly referred to as “existential”.²⁴ Thus, when inquiring about cancer-embodied experiences rather than asking about the experience in general, this approach offers the possibility of deepening aspects such as how illness has altered a person’s bodily engagement with his/her environment, or how it has modified a person’s bodily experience in social interactions, among others.²⁴ This existential perspective not only supplements but fundamentally enriches the traditional models by fostering a more comprehensive and empathetic approach toward the survivors’ well-being, integrating their physical, emotional, and existential dimensions in the healing process. As highlighted by Finlay in Les Todres’research on embodiment: “Embodiment enquiry is revealed as a practice that attends to the relationship between the experiencing body and language in an attempt to marry heart and head […] as embracing the body brings us closer to the mysteries of existence”.²⁵

Phenomenology is a method related to existential philosophy, that inquires into the subjective experience of individuals and thereby strives to bridge the body-mind divide.^20,26,27 The phenomenology of illness and disability is gaining traction in medicine as a path to investigate patients’ experiences surrounding bodily dysfunctions.^{22,23,26–28} Scholars within this field have recently explored how cancer patients understand and relate to their changed bodies.^22,23,29 As this literature illustrates, the phenomenological concept of lived body helps explain the subjective, bodily experiences of cancer survivors. This concept denotes how our body appears to us as a way of being-in-the-world, affording perception and action, providing important insights into patients’ bodily experiences.^27,30 Studies show that cancer patients experience a simultaneously changing body, self, and world.^31,32

Phenomenology represents a new paradigm in healthcare, according to which illness or disability can no longer be seen as merely a dysfunction of the mechanistic body, and ensuing distress can no longer be viewed as occurring in a disembodied psyche.^22,33 Indeed, this approach shows that illness and disability bring along an existential shift in the way patients inhabit their body and world. Despite the emergence of this paradigm, there is currently a lack of studies exploring the bodily experience of CACS. And although several studies in the United States investigate Latino cancer survivorship,^34–36 there is a paucity of research into CACS in Latin America. Unpacking the embodied cancer experiences of adult CACS in Colombia may help to understand their existential needs during and after the cancer trajectory. This study therefore aims to explore the bodily experience of Colombian CACS throughout their cancer experience and beyond.

Methods

Study design

Between February 2021 and April 2022, we conducted a qualitative study into Colombian adults’ embodied experiences of having survived childhood/adolescent cancer. The theory and framework used in this study were inspired by the phenomenology of the body, which provided a foundational understanding of the lived body and its significance in human experience.^27,30 Data collection consisted of life stories interviews and one focus group discussion that was used to share some of the initial findings with the participants and allow them to reflect on the emerging analyses.

Life story interviews invite participants to reflect on their entire life course and thus help them describe “the inner experience of individuals, how they interpret, understand and define the world around them”.³⁷ This method allows participants to share their lifelong embodied cancer experiences. Due to its in-depth nature, data may come from a small number of participants.

Sampling

This study builds upon a cross-sectional study that describes self-reported quality of life and health problems among Colombian CACS.³⁸ CACS were recruited through oncologists and patient organizations who contacted them to gain their consent to participate in the study. This sampling frame allowed participants with different characteristics in terms of type of cancer, age of diagnosis, etc. For the current, qualitative study, the first author invited seven respondents from the quantitative study to participate. All consented.

Inclusion criteria for selecting participants were: 1. Being Colombian adults (aged ≥18 years) with a medical history of childhood/adolescent cancer diagnosis;³⁹ 2. Being <18 years at the time of diagnosis; 3. Having survived at least five years since the diagnosis; 4. Having agreed to participate through informed consent.

Data collection

Due to the Covid-19 pandemic, six in-depth life-story interviews were conducted online; the seventh participant was interviewed face-to-face due to her visual disability. Two rounds of interviews were conducted with three of the participants since the first interview proved insufficient to cover all topics and/or because participants became emotional. After the initial round of interviews, we conducted a preliminary analysis and identified gaps in our understanding, particularly regarding participants’ embodied cancer experiences. Despite conducting individual in-depth interviews, some aspects remained unexplored particularly concerning their understanding of the concept of embodiment and how they experienced the changes in their body during the different phases of the childhood cancer trajectory. Recognizing the potential for a more comprehensive exploration, we opted to organize a focus group session with the same participants. Our objective was twofold: 1) to foster interaction among participants, and 2) to leverage the dynamic group setting to gain a deeper and more nuanced understanding of the concept of embodiment and how they experienced changes in their bodies throughout various phases of the childhood cancer trajectory. This approach allowed us to capture insights that would not have arisen in individual interviews, enriching our overall comprehension of the participants’ experiences. This focus group took place eight months after the interviews were held. The visually impaired participant was unable to attend the focus group and was therefore interviewed a second time. The interviews and focus group lasted 90-110 min each.

The interviewer requested and obtained informed consent from participants and began with an exploration of their daily lives. Participants were given a worksheet with a horizontal, chronological axis from birth to present and a vertical axis representing subjective well-being in life. They were then asked to visualize important moments in their lives on a temporal framework, with peaks representing ups and valleys representing downs.⁴⁰ After the activity, participants shared their life stories using a simple line graph, discussing the stages of their disease, treatment, and life after cancer. The interviewer asked open-ended questions about their experiences with surviving cancer and the role of their bodies herein.

Data analysis

The interviews and focus group were conducted in Spanish and transcribed verbatim. Selected quotes were translated into English by NGC (the main investigator), these translations were subsequently reviewed by EdV, both NGC and EdV (all being bilingual researchers). In line with our phenomenological approach, data analysis was not linear or sequential but rather a reiterative and dynamic one. Consequently, the analysis involved several steps in constant dialogue. Initially, the first author read, familiarized herself with and summarized all interview transcripts. In the process, she kept a reflective journal where she documented her own assumptions about the cancer experiences and the role these play in the process of interpretation and theme construction. Next, two researchers (NGC & NR) performed an initial thematic analysis, focusing on embodied cancer experiences. Then researchers used ‘NVivo16’ software to assign open codes to segments of the transcripts relevant to the study’s focus (e.g. “cancer diagnosis”, “pain”.) In consultation with the other authors, they then refined the analysis by focusing on participants’ descriptions of bodily changes and associated adaptations while navigating the phases of the cancer experience (acute stage, post-treatment period, present moment, and imagined future). Throughout this inductive process, the authors systematically organized coded data into categories and subsequently into themes. Analyzing the focus group data, we were able to reinforce the initial categories from the interviews and further refine the final themes.

We decided that we would evaluate saturation once interviews began to be repetitive and did not add new insights regarding the embodied aspects of participants’ cancer experiences. This provided confidence in concluding the interviews after engaging with seven participants and reinforcing our initial findings through the focus group.

Researcher reflexivity

The principal investigator and interviewer (NGC) is a female public health physician and a long-term childhood cancer survivor. As such, she was able to use her professional and personal experiences to establish rapport¹ with the study participants and thereby help them feel more comfortable when sharing their sometimes-difficult stories.⁴¹ NGC’s experiences as a survivor also played a key role during the formulation of the research question, data collection, and analysis.

Ethical framing

This study was conducted in accordance with the fundamental principles derived from the Nuremberg Code, the Declaration of Helsinki, and the Belmont Report. In addition, it complied with the standards of good clinical practice. Ethical approval for the study was granted by the Research and Ethics Committee (file number FM-CIE-0672-20). At the start of each interview, we informed participants about all aspects of the research project and the option to withdraw at any time; participants could ask questions. Next, they were asked to sign an informed consent. To ensure confidentiality, all personal information was anonymized and study materials were stored on an encrypted hard drive.

Results

The characteristics of the seven CACS interviewed are described in Table 1. Among them were three women, three men, and one transgender woman. Participants were 20 to 62 years old and survived different types of cancer: Ewing sarcoma, ovarian germ cell tumor, osteosarcoma, acute lymphoid and myeloid leukemia, Hodgkin’s lymphoma and retinoblastoma. At the time of the interview, the two bone cancer survivors experienced limping and had scarring on their legs. One participant was blind and had eye-socket and buttocks scars from tissue removed. The ovarian germ cell tumor and Hodgkin lymphoma survivors had scars in the abdomen due to an open splenectomy. The two leukemia survivors had no visible scars, but the myeloid leukemia survivor reported memory loss associated with cranial radiotherapy. All participants still have strong physical reactions triggered by memories of their cancer experiences.

Table 1. Participant’s characteristics.

Name*	Current age	Gender	Type of childhood cancer	Age at diagnosis	Currentsequelae
Carla	36	Female	Osteosarcoma	17	Scars in knee Limping Tinnitus
Sofia	20	Female	Ewing sarcoma	7	Scars in femur Limping
Anita	46	Female	Ovarian germ cell tumor	11	Scars in the abdomen due to multiple surgeries No other visible scars
Maria	27	Transgen-der female	Retinoblastoma	2	Blindness Bilateral eye socket scar from enucleation Scars on buttocks
Santiago	62	Male	Hodgkin lymphoma	17	Scar in the abdomen from splenectomy
Oscar	31	Male	Acute Lymphoid Leukemia	8	Non-visible scars
Juan	46	Male	Acute Myeloid Leukemia	10	Loss of memory

*The names are fictitious to safeguard the privacy of the participants.

Three main themes regarding the embodied cancer experience emerge from the data analysis, which loosely follow the stages of the cancer trajectory: 1. Awareness of bodily differences, 2. Adapting to an altered body, and 3. Bodily traces of the disease and treatment. Figure 1 visualizes the analysis.

Figure 1. Result categories identified following the trajectory of cancer stages.

Awareness of bodily differences

Throughout the cancer trajectory, participants became aware of their irrevocably changed body. This awareness is due to 1. Internally-felt bodily differences (e.g. lumps, pain), 2. Appearance-related issues, and 3. Others’ awareness.

Firstly, respondents reported experiences related to bodily changes, which mostly occurred before the diagnosis. Such changes made participants aware of their body. For some, feeling a lump was the first sign their body was different:

I remember (…) I was with my friends in a bar (…) then I fell, I mean, I got entangled and I fell to my knees, and we all laughed, right? So, I hit my knee hard, and there, I rubbed my knee, and I felt a little ball. I said, ‘That’s weird’ It’s like a little egg! A few days after, I told my dad I had felt a ball on my knee, and he told me better go to the doctor. (Carla, developed a bone tumor)

Secondly, participants described experiences related to their body image and appearance such as bruises, rash, hair loss, etc. The experience of hair loss is especially shocking for women, as hair plays an important role in women’s physical appearance. In addition to such appearance-altering changes generated by chemotherapy, there are also changes related to surgeries. To treat bone cancer, Sofia had to undergo several surgeries on her right leg, which led to visible differences and a noticeable limp.

Thirdly, participants discussed experiences that involved others’ awareness of their visibly changed body. Such awareness is expressed in either benign or hurtful/stigmatizing statements. Visible differences may thus lead to aid; Oscar who, while running a bank errand, received a stipend to cover medical transportation from the bank manager who had recognized him as a child with cancer. But visible difference may also lead to pity:

[My] mom’s acquaintances were like “oh! we want to say hello to the girl, visit her!” and I said “Why? I mean I am not a little animal in a zoo. Why do they want to visit me if they only know my name…I mean that’s all they know about me. Humm, or those who told me “Don’t worry, you’ve already earned heaven.” I replied “Okay but… I’m 17 years old and I don’t want to die yet. (Carla)

Carla’s description of feeling like an animal in a zoo evokes her awareness of her body’s being “othered” in the eyes of others.

Adapting to an altered body

Next to the respondents’ awareness of bodily differences come new ways of showing, using and thinking about their bodies. These include: 1. Hiding body changes to appear “normal”, 2. Developing new routines to manage their altered body, and 3. Giving up on future dreams regarding the body.

First, respondents’ visible differences affected their self-esteem and social life. Some therefore tried to hide or compensate for visible bodily changes by using medical aids. For instance, Anita felt self-conscious about her hair-loss and tried to “hide” this by wearing hats. After going bald, she used a wig when going back to school. However, this resulted in bullying:

That wig was not well made, and it was obvious it was a wig. And then, when I went back to school, there was a lot of teasing, and I was told a lot of nasty things, and some girls tried to pull my wig off… (…) I felt everyone was pointing out at me. (Anita)

After that, Anita missed school for two years—which highlights the negative impact on her body image and self-esteem. Maria, a survivor of retinoblastoma, felt ashamed of her blindness and visible difference due to the removal of her eyeballs, and wore sunglasses to hide both. Later, she learned to accept her changed face and never wore sunglasses again. Sofia, with Ewing sarcoma, had a visibly different right leg and a pronounced limp that required surgical correction. She wore limb length discrepancy footwear during her adolescence to disguise her visible difference.

Participants reported a second way of adapting to bodily changes: developing new routines. Some of these include learning to walk and flirt differently due to blindness or limping. Carla and Anita had to learn how to walk differently because of their limping and Anita had to learn how to flirt differently. Indeed, flirting generally involves visual codes, because of her blindness she had to develop special flirting codes.

Finally, adapting to an altered body involves the loss of dreams and goals associated with the previously healthy body. These lost dreams include becoming an athlete or having children. Sofía, a survivor of Ewing’s sarcoma, soon realized that she would not be able to become an athlete:

That time was horrible… I remember crying every night because I really wanted to be an athlete and I realized at 13 I was never going to become one unless it was for the Paralympics. I’m pretty sure I won’t even be able to enter the Paralympics…. (Sofia)

Sofia continued to express her ongoing ambiguity: she feels grateful for retaining her leg, but she is uncomfortable with her remaining disabilities.

Bodily traces of the disease and its treatment

After the acute treatment phase, participants needed to find their “new normal.” As mentioned before, some participants still carry tangible marks of their cancer experience, such as blindness, limping, and scars. But they also experienced other traces of the cancer experience: 1. Bodily memories; 2. Issues surrounding progeny; and 3. Anticipation of the disease’s return.

Firstly, some participants report that some objects, smells, and environments trigger memories of the cancer experience. For example, Anita cannot stand red beverages; every time she sees one (e.g. Red Bull) she feels nauseous, as she associates it with the red bag that contained her chemotherapy fluid. Oscar also discusses being triggered by and reacting physically to hospital settings:

When I go to hospitals my blood pressure drops and I feel nauseous (…) The last time I went to a hospital, I literally felt I was going to faint; (…) my blood pressure dropped so low I had to go to the toilet (…) and I threw up like I was sick. (Oscar)

Secondly, such bodily traces also appear in relation to having children. Some participants, such as Sofia and Juan, fear they will not be able to have children. Participants are also concerned about their future children inheriting and developing cancer. Sofia (21) expresses both issues:

Uhm, there are days I say… I will never be able to have children because there is something wrong with me that will not allow me to. It is said this is one of the possible complications, or [maybe] I will have [children], and I will pass my genes to them… (…) That scares me! (Sofia)

Finally, a third type of bodily trace left by the cancer experience is a strong emotional reaction to the possible return of the condition. Indeed, most participants remain attentive to the appearance of new symptoms that may signal a new onset. Carla, for instance, had an osteosarcoma relapse:

Before I went back to college…I felt a ball in the same place again, and I said, “No way!” I remember the day I talked to my dad, and I said, “Dad if I have cancer again and I have to undergo chemotherapy… I won’t allow it…” and he said “And then what? are you going to let yourself die? “And I said ‘yes, I’m not going through this anymore’. (Carla)

Carla’s story testifies of her heightened bodily awareness of irregularities, and strong, lingering emotional response to her treatment. Most other interviewees keep the likelihood of cancer recurrence in mind as well. Comments like we don’t know if it will come back… (Maria) or God forbids it happens to me again (Sofia) reflect uncertainty about relapse. These feelings, even if they do not paralyze participants’ daily life or future plans, are ghosts of an experience that permeate both their minds and bodies.

Discussion

This paper seeks to understand the embodied cancer experiences of Colombian CACS. Through life story interviews and a focus group, participants reflected on how the cancer and its treatment affected their bodies. Analyzing the data, we developed three main themes, showing that the cancer experience remains significant to how participants relate to their body well into adulthood. Firstly, changes to participants’ body are linked to heightened bodily awareness. Secondly, they adapt to this experience in different bodily ways. Finally, they bear permanent traces of their cancer experience.

Using a phenomenology approach enabled us to understand CACS’ experience in new ways, adding an existential perspective to the existing biomedical and psychosocial approaches. Firstly, most participants become more aware of their body, which resembles others’ findings in the phenomenological literature regarding other bodily dysfunctions. According to Drew Leder, the awareness of a healthy, able-bodied person is rarely experienced: it is ‘transparent’ and therefore taken for granted.⁴² Illness and disability, by contrast, are felt as disruptions of bodily certainty.²⁶ Secondly, participants’ narratives are evocative of the fact that the disease is not just a biological disorder but rather transforms how they experience and relate to their self, body, and world. Thirdly, participants’ distress about relapse or not being able to have children expresses an altered sense of time. This temporal dimension is also expressed in that the cancer experience comes to mean different things at different life stages. Indeed, the embodied cancer experience for older participants as Santiago (62 years old) or Juan (46 years old) has evolved over time, especially with the occurrence of other challenging life events such as the loss of a family member, getting a divorce or moving to a different country. Santiago for instance no longer expresses fear of recurrence; as the cancer experience has become distant, he is now certain that he is not going to die from cancer but from something completely different.

An additional finding highlights the social dimension of CACS’ experiences.⁴³ Indeed, participants’ awareness of appearance-related issues (e.g. scarring, baldness, etc.) comes from others’ responses to these differences. Visible differences may elicit aid, but also unwanted pity and “othering”. This is related to Jean-Paul Sartre’s “gaze of the other”, a mechanism by which individuals internalize other’s objectifying perspective. As he writes: With the appearance of the other’s look I experience the revelation of my-being-as-object.^43,44 This concept is highly relevant to healthcare since most illnesses involve appearance-related issues.^29,31,45

Although our exploration focused on the experiences of Colombian CACS, our findings are similar to those of a phenomenological study conducted in the United States in 2006 by Prouty et al. This study aimed to examine the lived experiences of adults who survived childhood cancer. Notably, our findings align with theirs, highlighting that the impact of childhood cancer persists into adulthood. Similar themes in this study and our own in Colombia include the enduring presence of uncertainty and the notion that cancer becomes integrated into the embodied identity of survivors.¹⁹

To conclude: our study shows that Colombian CACS’ cancer experience affects their lives and bodies well into ‘healthy’ adulthood and even their imagined future. This underscores the necessity for long-term follow-up, a practice well established in high-income settings where CACS have been studied for over 30 years.^19,34 However, in Colombia, and more broadly in Latin America (with a few exceptions in Chile and Mexico), childhood cancer survivors do not receive long-term follow-up. The predominant focus remains on curative care for childhood cancer.⁸ Consequently, adverse events in this population are not documented or addressed—be they physical, psycho-social, and existentially—in the short, medium, or long term This study therefore adds important insights into the embodied experiences of CACS that extend beyond immediate survival, emphasizing the need for long-term support in Latin America at large and Colombia in particular. The final section below details more concrete clinical implications and recommendations to redress these lacunae.

Strengths and limitations

To our knowledge, this is the first qualitative study into the embodied experiences of CACS in Latin America. Another strength is that the interviewer disclosed her identity as a childhood cancer survivor, which enabled her to build rapport with the participants and thereby come to deeper insights. A further strength is the interview method: life-story interviews offer an overview of participants’ life, which allows for a temporal perspective on their ongoing experiences. In addition, the study offers a novel perspective into the existential aspects of CACS’s experiences. Finally, the three themes were co-constructed between the interviewer and the participants, which allowed participants to include their voices and verified the analysis presented.

The study’s main limitation is the small number of participants. Indeed, seven CACS are neither representative of nor generalizable to the Colombian CACS population. However, due to the length, frequency, and in-depth character of the life-story interviews we did reach data saturation. Moreover, the richness of the data yielded means that relying on small sample sizes is common practice within this methodological approach. In addition, even though participants’ heterogeneity is a strength, it is also a weakness since this did not allow us to delve deeper into experiences associated with distinct cancers. Finally, the fact that the interviews and focus group were conducted remotely may have influenced the interaction between the interviewer and the participants.

Psychosocial oncology implications

CACS participating in this study have reported that their cancer journey has significantly altered their body perception, leaving enduring impacts over time. This indicates a potential need for support that is geared toward the existential aspects of the cancer experience particular those aspects that are tied up with bodily changes. Such support necessitates that healthcare professionals acknowledge and comprehend the embodied aspects of CACS’ cancer experiences that extend beyond immediate survival, and guide CACS as they develop a new relationship with their transformed bodies. In the current Colombian context, the experience of cancer survivors is often considered a closed chapter by both healthcare professionals and the patients’ social environment. However, survivors continue to carry these experiences with them. As Rita Charon, MD, a pioneer in narrative medicine, states: “Sick people need physicians who can understand their disease, treat their medical problems and accompany them through their illnesses”.⁴⁶ A phenomenologically-informed understanding of CACS’ bodily experiences could enhance healthcare professionals’ empathy and enable them to inform patients about potential long-term bodily-existential issues. Furthermore, patients may need assistance in managing bodily awareness and appearance issues, developing new bodily routines, handling bodily manifestations of emotional triggers, and confronting bodily-existential questions regarding progeny and the possibility of relapse. As such, CACS can benefit from the support of psychosocial workers throughout their lifetime. Lastly, raising public awareness about adult cancer survivors’ experiences extends beyond the realm of medicine. This can be achieved through the establishment of peer support groups, publicly funded campaigns, or sharing survivor narratives online. Such initiatives can help foster a more empathetic society that better understands and supports cancer survivors.

Ethics approval

Written approval was received for this study from the Faculty of Medicine - Research and Ethics Committee of the Pontificia Universidad Javeriana, Bogota on 15/07/2020 (FM-CIE-0672-20).

Author contributions

Natalia Godoy-Casasbuenas, Esther de Vries and Gili Yaron devised the project, the main conceptual ideas and design of the study. Natalia Godoy-Casasbuenas and Nicole Rodriguez participated in data collection and transcription of the life-story interviews and focus group. Natalia Godoy-Casasbuenas, Nicole Rodriguez, Gili Yaron and Yazmin Cadena participated in the data analysis. Natalia Godoy-Casasbuenas wrote the manuscript with input from all authors. The authors read and approved the final manuscript.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Acknowledgements

The authors are immensely grateful to the participants who took part in the study and shared their stories

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The consent forms did not specify that the data would be deposited in a public repository, and for this reason we are unable to deposit the data. The dataset will be made available from the corresponding author (Natalia Godoy Casasbuenas, natalia.godoy@ javeriana.edu.co) upon reasonable request and subject to a data sharing agreement.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes

1 In qualitative research, rapport is the researcher’s ability to connect with the participants in a way that creates a climate of trust and understanding to enable a relationship to be established that will lead to the sharing of rich and insightful data.