A Qualitative Study on Promoting Maternal Occupations and Health: Lived Experiences of Breast Cancer Survivors Within the Workforce Promoting maternal occupation and health

Main Article Content

Frances Drew Bosque https://orcid.org/0000-0002-3875-4022
Brinkley Angeli Deticio https://orcid.org/0000-0002-0949-3548
Regina Clare Urbina https://orcid.org/0000-0003-4211-0147
Paolo Miguel Bulan https://orcid.org/0000-0001-5182-3224

Keywords

breast cancer, maternal health, occupational therapy, occupational science.

Abstract

Background: This study aims to understand the factors that support occupational engagement of working mothers who are breast cancer survivors based on their experiences. These factors are vital for occupational therapists and other health professionals in the promotion of their health and well-being. 


Methods: Using phenomenology, through in-depth interviews, this study explored experiences of mothers who survived breast cancer and have returned to work. Ten participants from ICanServe Foundation in Cebu, Philippines participated in one-on-one interviews.


Results: Thematic analysis identified three themes: (1) Baggage and uncertainties of life with cancer, (2) Lessons on grit, and (3) Beating the odds through occupational adaptation. Findings suggest that mothers face obstacles both in the home and in the workplace.


Conclusion: Obstacles identified include mother-child role reversals, physical and cognitive changes, stigma and discrimination in the workplace, and fear of death and uncertainty, which indicate the need for support. Findings based on their experiences can help inform collaborative efforts from occupational therapists and professionals across disciplines to support breast cancer survivors such as maternal support groups, informing employment or workplace policies, and community opportunities.

INTRODUCTION

Occupational therapists utilize occupations or everyday activities and tasks that individuals or communities engage in for the promotion of health and well-being in their day-to-day lives. 12 Through various literature surrounding occupations, it is posited that an individual's occupational engagement can be a determinant for their overall health and life satisfaction. 34 Given a holistic view around occupation, this can be influenced by many factors, such as personal (physical and psychosocial abilities) and contextual (cultural, physical, social, and virtual) factors. This gives us the notion that in order to promote health through occupational engagement, occupational therapists, along with other members of the inter-professional healthcare team, must be aware of the different factors that affect successful occupational engagement.

Among the many clients that occupational therapists cater for are those who suffer from cancer. 5 In this article, we will be focusing on mothers who are breast cancer survivors and are part of the workforce. The diagnosis of cancer is considered as both an intrapersonal and interpersonal experience. Several challenges arise not just in the family, but also in careers: the individual's role as a mother, a wife, a family member, a friend, in addition to problems in their occupations. Another challenge faced by working mothers is stigma or discrimination in the workplace.

Despite these challenges, many mothers who survive breast cancer still desire to return to work as a means for family income, for social contact, a source of identity, and a sense of normalcy. These various instances can affect the mothers' opportunities for occupational engagement and potentially affect their health and well-being. 6 For many, motherhood is an essential role in life, 78 and in the Philippines, the mother's role is the caregiver who instils values and discipline among children. At present, mothers have an active role in the workforce. Balancing parenting and having a career bring stress to these mothers. 9 With the onset of cancer, the existing stress can be multiplied and can affect the entire family. Children, in particular, have a higher risk of emotional and behavioral issues. 10 Disruptions in schedules and daily routines, shifts in family duties, financial stress, and the physical and emotional availability of either parent all contribute to emotional and behavioral issues. 10 In this study, the authors aimed to understand the experiences of mothers in Cebu, Philippines who survived breast cancer and have returned to work. Through their experiences, the impact of being a breast cancer survivor on their identity, roles as a mother and as a worker, and their occupations was explored. Findings based on their experience can help inform collaborative efforts from occupational therapists and professionals across disciplines to support breast cancer survivors. The findings can also inform employment or workplace policies and community opportunities.

METHODS

Design

A qualitative approach, specifically phenomenology, was used in this study since it allowed the authors to look into the lived experiences of the participants, 11 through interview transcripts which served as the data sets. The study was based on a constructivist worldview to aid in understanding the lived experience of the participants.

Participants and Sampling

Ten participants were recruited and interviewed personally through the ICanServe foundation, a nonprofit organization that advocates early breast cancer detection. Purposive sampling was used for maximum variation across ages, breast cancer survivors at any stage, having underage children, and full-time or parttime job status. This allowed for a more diverse and inclusive perspective of breast cancer survivors in the workforce. Mothers who had other types of cancer and comorbidities were excluded from the study as it would entail a different perspective from those solely with breast cancer.

Data Collection

A semi-structured interview that centered on the experience of the participants who survived breast cancer was used to address the research question. Indepth individual face-to-face interviews were conducted by the first, second, and third authors after the completion of consent forms. Permission was also asked to audio record the interview. Interviews were 40-60 minutes long, with the interviewer assuming an active listener role to allow the participants to share their narratives. Probes were also in place to ask for clarifications and examples.

Recordings were transcribed in a Microsoft Word document and cross-checked by the authors for accuracy. Data was de-identified by removing the participants' name and age, and by labelling the transcripts only with numbers (e.g., participant 1, participant 2). When Bisaya words were used, the recording was transcribed first and then translated to English. Data collection was ended when data saturation, 12 was achieved by the 8 th interview and was confirmed by the 9 th and 10 th interview.

Data Analysis

Thematic analysis, 13 was manually done by the authors to allow familiarization with the data by multiple readings of the transcripts prior to coding. Individual transcripts in separate documents per participant served as data sets for the study. The authors made notes while getting familiarized with the data in preparation for coding. After coding, themes were identified based on the trends across participants and their relationship to the research question. After initial identification of themes, authors reviewed the identified themes to check whether they can be merged into one theme or be separated. Notes of the data analysis process were made by the authors as an audit trail to keep track of what happened and how it happened.

Rigor and Trustworthiness

First, the creditability of the findings was ensured through peer review done by the first three authors and then by the last author. Second, member checking was done by sending the themes to random participants to check whether they reflected their narratives. Third, an audit trail, 14 through note writing during data analysis was also done to ensure rigor. The authors also made use of personal journals for reflexivity to keep track of their thoughts and feelings throughout the process to avoid projecting them onto the findings.

RESULTS.

Three distinct themes emerged, each with two subthemes. Table 1 summarizes the themes and subthemes.

Baggage and uncertainties of life with cancer

The first theme tackles the shared personal challenges that the participants have experienced from the time they were diagnosed with cancer up until the present despite having recovered from the illness. The personal challenges identified by the participants were categorized into two subthemes: My Interpersonal Challenges and My Intrapersonal Challenges.

My intrapersonal challenges

This subtheme tackles the internal conflicts that some of the participants encountered. Participants acknowledged that living with this fear of recurrence has been like a shadow in their lives. Some of the participants' greatest struggles upon being diagnosed with breast cancer were the never-ending whys and endless bargains with a higher being, in hopes that they would be spared a chance to live beyond the diagnosis:

When I knew that I had cancer, I thought to myself 'Why me?' I'm not a bad person… I go to church, and I remember that I used to cry every time I visited the church and asked Him for another chance (Participant 4).

Cancer-related fatigue most likely cannot be relieved by rest or sleep; therefore, it is extremely debilitating when returning to previously assumed roles and responsibilities in the workplace, as indicated in the following quote:

When I received my chemotherapy, I experienced headaches to the point of not wanting to go to work anymore. Even now during my dragon training, I cancel it whenever I sense that my body does not feel well (Participant 8).

Although conventional chemotherapy also brought about cognitive changes, it did not greatly affect the goal towards fulfilling the role as a mother:

... Whenever I'm doing something, such as let's just say, for example, talking to you, and then suddenly, another task pops up into my head. … 'What am I going to do again? Why am I here?' I'm already not the same as before. But as a mother, I was still able to fulfil my role and I never neglected that despite everything. It's just the minor changes (Participant 7).

My interpersonal challenges

Interpersonal relationships, between the participant and their co-workers or children, was an aspect where the participants experienced changes. This subtheme delves into their perspectives of interpersonal challenges.

Fear was a typical response among the participants who have faced a life and death situation at one point in their lives. The journey towards cancer survival was described as expecting for the worst and picturing the possible consequences of their death for their children:

My son used to be an honor student. He got zeroes in his tests! I was emotionally hurt at that time. I thought to myself, 'What if I really die?' What will happen to them? (Participant 1)

From an ideal point of view, a mother's role has always been about caring for her children, whether their physical, emotional, or mental needs, but what happens when the role reversals occur between a mother and a child:

... My children would tell me, 'Mom, from now on we will do the laundry.' It feels like our roles got reversed (Participant 2).

Upon returning to work, the participants reported instances of stigma and discrimination. With the coworkers' impression of the physical and cognitive changes that come along with undergoing cancer treatment and the diagnosis itself, sometimes it could result in the participants receiving too much attention or special treatment affecting the quality of their work experience:

[Co-workers] told me that they don't think I have the ability to work as well as before … Instead of gaining customers, I lose them because of their fear that they may be the reason for the exacerbation of my sickness (Participant 4).

Lessons on grit

The participants discussed the reasons why they chose to go back to work after their treatment and showed grit. Participants had the opportunity to reevaluate their lives focusing mainly on priorities, family, careers, and other relationships. They have also rediscovered themselves through searching for meaning and finally understanding what really mattered to them.

Concept of Necessity

Participants need family support and at the same time be financially stable to survive and thrive:

Since we don't have any other source of income … We don't have anything to eat if I don't choose to go back to work … where do we get money to pay for my children's tuition …? (Participant 8)

Having a job can be one way to pay for the necessities of life. Aside from being a mother, the role of a worker pushes "… for survival. I just have to." (Participant 5)

Another concept was the need for a strong support network. Having a good support system was an important factor to help them get back on track:

The treatment there in another country [USA], never felt so lonely because I have the full support from my family. That is really important when you get sick when you have full support (Participant 3).

Having support can decrease their burden and worries and even give them a perspective of choosing to look at the brighter side despite their condition stating that:

I thank God that there is someone there to support me -my husband was one of the greatest gifts I have received … to support me emotionally, financially … he [son] even worked hard with his dance troupe to win the championships so that I'd be happy (Participant 1).

Concept of Life's Purpose

The participants showed positive attitudes when it came to dealing with the effects of cancer. This subtheme elaborates how participants feel a sense of purpose to get back to their lives. Participants focused on their current capabilities and rediscovered that their sense of productivity at the workplace was one of their purposes in fulfilling their role as a working mother:

After my operation, I continued working but from home because I feel useless if I don't continue working …While I was on my sick leave, my head was already spinning on what to do. I made a to-do list for when I start going back to my workplace (Participant 1).

Despite having to face struggles, they strive to become a better version of themselves. They see their survival as a belief to give their life meaning and a source of empowerment:

… I realized that I have a purpose why God chose to keep me alive -it's because I give strength to others and the inspiration to live and to continue living … [Someone diagnosed with cancer] didn't know what to do and how to cope, she didn't have any money. I gave her lifting words and advice from my experiences and that made her have the strength and the decision to go with the operation. … I'm a health youth coordinator … Every October, I use my platform to go visit schools and then see to it that they know how to self-breast exam (Participant 1).

One participant emphasized the role of a worker and a mother as her source of identity even after surviving her condition:

Even when I have to balance work and being a hands-on mother, I can still do both. It is a matter of how you manage your time. Actually, you can do both if you have the passion and the love (Participant 3).

Beating the odds through occupational adaptation

The third and last theme tackles the measures taken by the participants to resume their lives as best as possible. Two subthemes were recognized: Embracing Change from Within and Restructuring Situations. These were raised by all the participants in the study as they delved into their new experiences and the corresponding initiatives they took because of cancer diagnosis.

Embracing change from within

This subtheme elaborates how participants found the need to take on a new perspective after being diagnosed with cancer. Participants accepted the changes that breast cancer brought into their lives and they learned to care for themselves as compassion for oneself is needed before they can show the same compassion for others:

I need to take care of myself before anybody else because how can I function as a mother, as a, I'm a chief nurse, by the way, at [a public health office], so as a career woman, as a wife, if I put all of them before myself? (Participant 1)

There was the stigma that cancer was a threat to one's life. It was important to see cancer in more positive terms. Others saw cancer as something that turned them into more self-assured and driven versions of themselves instead of something that would shrink them away from a good life:

It is life-changing because you learn to look at life differently. Every day counts and you have more YOLO [You Only Live Once] moments … My cancer made someone out of me. I was able to tell myself, I guess I really do have a mission, right? (Participant 7)

Restructuring situations Participants incorporated lifestyle changes including organic diet and participated in active exercises to promote health and well-being and reduce the risk of cancer recurrence. Engaging in physical activities as proactive leisure was what the participants looked forward to. It allowed them to work on post-operative and chemotherapy side effects like numbness and endurance. This also provided social interaction with other survivors with whom the participants could empathize:

I'm also a part of the dragon boat team. We usually have a sense of numbness in our arm, especially if we don't get to exercise, so we have difficulties in raising our operated arm. That's why repetitive body exercise is important so that the arm will get used to it. I also joined the [dragon boat] team despite our ages. I'm even more active now as compared before. I also gained more confidence and saw more positive effects (Participant 5).

One of the participants found self-isolation to be a good coping strategy. Being away from other people also allowed for reconnection with the self and time to prioritize life goals. Journaling was also another coping mechanism. Writing in diaries allowed the participants to pour out their emotions, a necessary step before being able to manage them:

I kept a diary where I wrote down everything I felt during the day, my plans, and basically, anything. It was nice as I got to pour out my feelings and emotions because of course I went through a very emotional stage (Participant 6).

The participants also found comfort in their faith on a higher being who was constantly looking out for them:

For me, if you just have faith in God and if you have positive thinking over your illness it will count to overcome this illness (Participant 4).

The participants experienced a shift in their respective work contexts which needed adjustments. There were difficulties finishing workload in one sitting and therefore divided the workload accordingly:

If I have trouble finishing paperwork, I do them the day after. Before, I was a person who wanted to do everything now even though it can still be finished until tomorrow. Now, if it can be done tomorrow, I'll choose to do it tomorrow (Participant 3).

Support from the managers and co-workers were important. Supervisors of some participants allowed flexible office hours and gave permission for taking naps inside the office. Overall, the understanding and consideration allowed for an atmosphere that made the cancer survivors feel welcomed and accepted:

I was just lucky … I work in an office with people who understand what I'm going through so they never complained about my absences (Participant 6).

There was also a disappointment in not being able to fulfil the role as a hands-on mother and facilitate their child's development, "It's an entirely different experience when you personally look after your child" (Participant 7). Other participants continued to draw strength from wanting to give their children a more privileged life. The need to continue the role as a mother was evident in the participants who continued to join PTA meetings despite the side effects of therapy such as fatigue and nausea. Cancer was considered purely physical -something that could never take away the way a mother would prioritize her children always as stated in the quote:

… The changes in my body were purely physical. In terms of the way I raised my children, my obligations, the way I prioritize them, these stayed the same (Participant 8).

As cancer brought about changes not just to the participants but to their families as well, certain changes were incorporated as new priorities occurred to their minds such as not being as rigid as one used to be:

So I was stronger, stronger than ever for them. As a mother, before I was so strict. I wanted them to have perfect scores. Yeah, because I'm a type-A personality. Right now, I don't care. No, not that I don't care but I don't push them that hard because there's more to life than scores (Participant 1).

DISCUSSION

This study focused on the experiences of working mothers who survived breast cancer and explored the impact of being a breast cancer survivor on their identity, roles as a mother and as a worker, and their occupations. The themes described how these mothers undergo stages of uncertainties, opportunities for learning, and adapting their occupations to fit life with cancer.

The participants dealt with physical and cognitive changes as effects of treatment for breast cancer. Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that occur during and after cancer treatment. 1516 Duties and responsibilities as a mother pertain to a long list of roles that could range from being a cook, a housekeeper, a chauffeur, and a finance manager all at once. Chemo brain can potentially influence the fulfilment of these roles and the successful engagement in related tasks and activities. Overall, the physical and cognitive changes that the participants experienced secondary to chemotherapy side effects were noted to affect their roles and responsibilities as a mother and a worker.

The themes highlighted issues in the workplace and a call for occupational justice. Occupational justice highlights a fair society that acknowledges the needs for individuals and communities to engage in meaningful occupations. 1718 Without occupational justice, others are relegated to a life in which they are unable to develop their occupational potential. 1819 When the mothers experienced occupational injustice stemming from stigma and discrimination due to their illness upon returning to work, their opportunities to engage in work-related pursuits were greatly affected, leading to instances where they could not fulfil their expected roles and engage in meaningful occupation. This disruption of their roles limited the activities the participants could engage in their workplace, showing the need for the therapeutic use of occupation for breast cancer survivors for them to successfully return to work. 20 Job flexibility and co-worker support were factors that helped them in returning to work. Fatigue required more schedule flexibility. Setting starting and stopping times while performing the job and the ability to schedule specific work activities were important. 21 Others incorporated more frequent rest breaks and acknowledged their body's limits post-cancer. One main reason the participants chose to go back to work was their financial matters. Being a mother with a successful career not only gives financial independence but also adds to the completeness of being a woman. 9 The discovery of having cancer affects daily routines, family roles, and plans. Immediately after diagnosis and throughout the treatment period, support from family and friends is critical to help one regain a sense of normalcy, maintain emotional stability, and improve their chances of ensuring a positive clinical outcome. 622 The participants highlighted the importance of having family support in their on-going experience of cancer. They mentioned that family support provided them stress relief by boosting their self-esteem and lessening anxiety and worries.

The subtheme that touches on the concept of life's purpose after the diagnosis of cancer elaborates on giving life meaning and rediscovering their identity and worth along their journey with cancer. The participants' experiences of meaning and enrichment, enjoyment, identity, and quality of life within their chosen work appear to be initially derived from engagement due to illness. It is at this instance that participants' being is highlighted wherein they reflect on themselves and their roles. 4 The cancer experience is also shared by those close to the person, and in the case of mothers, their children. In our study, cancer was perceived as a threat to a mother's parental role, something that could undermine one's ability to care for her children and keep the family together. After cancer diagnosis, the participants desired to become a better version of themselves for the sake of their children's growth.

Also, the participants found that going back to work would help them keep their sense of identity and sense of belonging. 23 Returning to work helped boost their self-esteem aside from receiving income for their families. They elaborated that their experience with cancer helped them rediscover their purpose connected to a meaningful, satisfying job. They wanted to get back on their feet and fulfil their role as a working mother.

There is a need for empowering others going through the same condition. By sharing their life stories and challenges that they have faced, this gives others strength and provide a better way of coping with their problems. This experience also gives them a new source of identity to give inspiration to the youth and those struggling with cancer.

Acceptance of their condition allowed the participants to realize that they were in a very powerful place to make important lifestyle changes. The participants had occupational needs which influenced their health. 2 They engaged in occupation to overcome physiological, psychological, or social discomfort, and to promote health and well-being. 224 The new situations experienced by the participants post-cancer prompted them to become changed individuals; they aimed to make the situation better to fulfil their roles and successfully engage in their occupations to become relatively healthier and have a better sense of wellbeing.

Limitations

While the experiences were shared by all the participants, their narratives were all grounded based on the context of the organization they were affiliated with. The authors included diverse experiences based on the cancer stage and employment status but did not explore the differences between them.

CONCLUSION

Breast cancer survivors who continue to be working mothers play the dual role of a mother and a career woman. Their shared challenges include mother-child role reversals, physical and cognitive changes, stigma and discrimination in the workplace, and fear of death and its uncertainty. This shows a great need for overall support from their family and co-workers. Despite difficulties in returning to work, participants are pushed due to the greater need for financial stability and a sense of productivity. Accommodations in the workplace help address their limitations and minimize stigma and discrimination through a collaborative effort of professionals across disciplines. As survivors of breast cancer, they find purpose to give strength and inspire co-workers who are currently diagnosed with cancer. In our study, despite the struggles that accompany the illness, fulfilling the responsibilities of a mother gives them a source of identity. Through the acceptance of their condition, the participants adopted a change of perspective, modifying lifestyle and work behaviour, and exploration of new interests.

ETHICAL CONSIDERATIONS

Approval of the study was given by the Velez College Ethics Review Committee (VCERC-2019-COT-002) to guarantee compliance with ethical standards before conducting the study.

Summary of themes and subthemes

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