Participation in Everyday Occupations Among Rohingya Refugees in Bangladeshi Refugee Camps

Research Design

We used the phenomenological method, which entails application of hermeneutics and selection of participants who have lived experience of the social phenomena of interest, who are willing to talk about their experience and related personal meaning, and who are diverse enough from one another to enhance the possibility of rich and unique stories of their particular experience (Rodriguez & Smith, 2018). Specific social phenomena of interest include the beliefs, interactions, and functions of Rohingya refugees that involve the family and other people in a crisis.

Researcher Positionality, Roles, and Power Dynamics

The first author (Yeasir A. Alve) is a Bangladeshi occupational therapist who has supervised the fieldwork of occupational therapy interns in marginalized communities and coordinated this research project. The second author (Azharul Islam) has 1 yr of experience working in various refugee camps, and the third author (Brittany Hatlestad) is a graduate research assistant who provided assistance in the process of research analysis. The fourth author (Mansha P. Mirza) is an occupational therapist and seasoned researcher with more than 15 yr of experience doing research and community service with refugee communities. Data collection for this study was primarily conducted by Islam under Alve’s guidance and supervision. Data analysis was conducted collaboratively between Islam and Alve, and Hatlestad and Mirza helped with the organization of themes and the development of the study’s implications. All four members of the research team approached their roles and this study with a firm belief that all persons are entitled to human and occupational rights. None of the authors has personal refugee experience, although Mirza has a family history of displacement and refugeehood. All authors acknowledge their privilege as professionals with freedom of mobility and a steady income. During fieldwork, steps were taken to ensure that the resulting power differential between the researchers and the study participants did not coerce or further marginalize the participants. For example, the interpreters in this study were persons with personal refugee experience who had lived in a refugee camp for many years. Their involvement reduced the power imbalance that inherently existed between researchers and participants and created a dynamic that invited participants to express their views freely.

Participants

The participants, people who live in the Rohingya camps, were selected through a heterogeneous sampling strategy (Patton, 2002). The Bangladeshi Office of the Refugee Relief and Repatriation Commissioner approved the research ethics and safety guidelines for conducting this study (Approval No. 2018-2077). The Bangladeshi government granted permission to access refugees from three designated Rohingya camps. Participants were recruited from these camps on the basis of the following inclusion criteria: (1) adult refugees between ages 18 and 60 yr, (2) a minimum of 6 mo to a maximum of 2 yr of living in Rohingya camps, and (3) cognitive capacity to respond to questions during the interview. The specific time frame of 6 mo to 2 yr was selected because that is when displaced people experience the most challenging events, engage in self-reflection or dialogue with themselves, and begin to make decisions that affect the rest of their lives (Davies, 2005). Participants were excluded if they (1) had communication difficulties due to any speech disorders or notable cognitive impairment or (2) had permanent residency in the host country and lived in settings other than the three designated camps. Acting as research collaborators, the data collector (Islam) and native Rohingya interpreters received training from Alve to ensure personal, research participant, and environmental safety during interviews. The first two interpreters who responded to a job ad posted in the camps were selected on the basis of the following inclusion criteria: (1) were natives of Myanmar who evacuated to Bangladesh in 1990; (2) had a legal refugee card that allowed them to visit different camps, humanitarian organizations, and the local community; and (3) were older refugees (age ≥60 yr) with long-term refugee camp experience and consequently had developed skills to minimize any emotional or behavioral consequences during the interview.

Recruitment involved two components: (1) building rapport between the researchers and the potential participants through native interpreters and (2) screening potential participants. In qualitative research, native interpreters are commonly used to efficiently understand specific local languages (Schweitzer & Steel, 2008). To recruit participants, the person in charge of the camp shared the data set of 80,000 Rohingya refugees who lived in the research-permitted camps. On the basis of inclusion and exclusion criteria, the research collaborators identified 10 potential refugees from each camp. They then narrowed the total number of candidates to 20 by prioritizing the heterogeneity of sociodemographic characteristics, such as different gender, living areas, marital status, and types of a family (e.g., two-parent vs. single-parent households). At the initial meeting with participants, the research collaborators emphasized that participation was voluntary, that pseudonyms would be used to ensure anonymity, and that participants would be able to withdraw from the study at any point in the process. After the collaborators received verbal and written consent from the 20 initial refugee participants, the first interviews started. Three candidates withdrew at the time of the second interview and requested that their information be removed from this research. Two other participants were not available during the daytime or while the research collaborators visited their temporary living shelters. The characteristics of the final 15 participants are presented in Table 1.

Data Collection Procedure

Data gathering consisted of two interviews with each participant and additional observations to help us better understand the local context through a cultural lens. Two interviews were deemed appropriate to allow for building rapport and collecting foundational data during the first interview and for asking follow-up and clarification questions during the second interview. Islam conducted semistructured, in-depth interviews developed from guidelines outlined by Smith and colleagues (2009). He speaks the Chittagonian dialect, which matches 90% with the Rohingya language; however, the accents are different. Although familiarity with 90% of the vocabulary of a language is substantial, it may lead to some information being missed; thus, interpreters were used to fully comprehend the meaning of participants’ responses, including their local jargon. Questionnaires were developed in Bengali and later translated into the Chittagonian dialect by Islam and the interpreters. All interviews took place at each participant’s shelter. The interpreters initiated the first interviews, and the participants were asked to describe their experiences through an initial open-ended question: “Can you please tell me about daily life activities that you are doing in your small shelter?” Participants then were encouraged to expand their explanations through semistructured questions (see the Appendix). The interpreters explained Islam’s questions to the participants and summarized the participants’ answers for him while providing an additional explanation for unclear jargon or meaning. This helped clarify responses for Islam, who understood the local language, with the exception of some jargon. Because the interpreters translated and clarified the meaning of any jargon in the presence of the participants being interviewed, this process verified the accuracy of translation and helped avoid misinterpretations.

In the second interview, the participants were requested, while respecting their personal and religious dignity, to show, explain, and demonstrate their daily living activities inside and outside the temporary shelters. Islam conducted both participant and nonparticipant observations of these activities using a structured guide that included cues to capture the physical and social environments (see the Appendix). He also informally communicated with other family members and neighbors, when participants granted permission, to obtain additional perspectives that could shed more light on the participants’ statements. With multiple generations of family members living in the same shelter, some participants asked to discuss certain topics, such as experiences of domestic violence, a spouse’s extramarital relationships, or unauthorized work, privately, outside the living shelter.

The two interviews were conducted between November 2019 and January 2020, and each interview took 1 to 2 hr. Data were recorded using an IC Recorder (Sony PX470), and field notes were recorded to capture participants’ actions, expressions, and gestures (Sutton & Austin, 2015). Islam and collaborators separately transcribed interviews verbatim in formal Bengali language. Alve resolved the dissimilarities through conversations with Islam and the collaborators in February 2020.

Data Analysis

Interpretive phenomenological analysis (IPA) involves the authors’ sustained engagement in an interpretative relationship with the transcripts and field notes to capture and do justice to the participants’ experiences in their mental and social worlds. The flow of data analysis followed the IPA’s six-step guideline, with flexibility (Smith & Nizza, 2021). The process of interpretation adopted line-by-line analysis to capture quotations and patterns that depicted experiences of participation in daily occupations. Participant experiences were translated to English and are quoted in this article using pseudonyms. All captured quotes were termed, collectively, initial codes. First, Islam transferred all initial codes to an Excel file, after which he and Alve read the initial codes separately to interpret the meaning of each code. This interpretation process involved supporting documents, such as field notes and notes from observations. The notes helped contextualize participants’ verbal comments; illustrate participants’ facial expressions and nonverbal language; and emphasize particular phenomena, such as a feeling of stress because of an unexpected routine or an embarrassment because of involvement in unlawful activity.

After interpreting the meanings of the codes, Alve and Islam engaged in an analytic discussion to eliminate any confusion. The mutual coding process determined a total of 22 selected codes by comparing each participant’s quotations. To aid in categorization, Islam assigned an operational definition to each selected code that was based on the initial codes and quotations. For example, a selected code “feelings of insecurity” was assigned the operational definition “anxiety regarding everyday goals, lack of confidence to maintain relationships, and inability to handle the crisis.” Alve revisited all the draft categories that were derived from the 22 initial codes. Further discussion with Hatlestad and Mirza resolved any remaining disagreements regarding coding and the process of categorizing codes. By comparing the codes and categories, we identified four initial themes, two of which could be further categorized into two subthemes each.

Trustworthiness and Rigor

Strategies outlined by Koch (2006) were used to ensure research quality, consistency, and structure. Islam conducted pilot interviews with two potential participants before commencing formal data collection to modify the interview and observation guides as needed. To establish credibility, interviewers kept field notes during the first and second interviews to record experiences while asking questions and observing everyday occupations in the participants’ natural environment. The research collaborators transcribed, encoded, and analyzed all the data separately in interpreting study findings.

After completing the data analysis, Islam and the interpreters executed member checking and ensured that the draft themes and categories represented the participants’ voices. The interpreters met with the participants and shared all anonymous and individual quotations connected to the drafted themes and subthemes in the form of a flyer. Over the course of the data collection, one-third of the participants were relocated to different refugee camps, and it was challenging for interpreters to locate them. Most of the participants gave their approval of the themes and subthemes. Others disagreed and offered suggestions for potential edits to more accurately reflect their lived experience. Thus, the categories were reevaluated and edited on the basis of the participants’ opinions regarding the themes and subthemes, which ultimately enhanced their trust in the research process. The dependability of the research was increased because two authors were separately involved in the initial coding process, and consultation with Hatlestad and Mirza helped conceptualize the categorization and theme making. In addition, reflexivity helped bring forth any preconceptions that entered the analysis. For example, the back-and-forth process of identifying themes, categories, and initial codes throughout the analysis resulted in a more authentic reflection of experiences shared by the participants.

Theme 1: Mental Stress, Sleep Disturbances, and Daily Occupations

Mental health conditions, such as anxiety, depression, PTSD, restlessness, and suicidal ideation, negatively affected sleep routines, which in turn hindered participants’ ability to take part fully in daily activities. Participants engaged in several adjustment strategies, such as modifying routines and spiritual healing, in an attempt to address these problems.

Past incidents, such as human trafficking and genocide, were experiences that interfered with peaceful sleep and rest. Participants mentioned difficulty sleeping at night. The concerns they expressed included sudden wakefulness, wild laments, crying, unusual sweating, and frequent thirst. Participants themselves, or their families, had previously experienced physical torture, such as hearing and seeing weapons being fired, witnessing murders or rapes, and other experiences that eliminated peaceful rest. Participants felt panicked or upset every night and frequently became sick. As a result, sleepless nights interfered with daily occupations, as evidenced by this quote from Begum:

I often dream that some bastards are raping me forcefully, crying loudly, and no one came to [my] rescue. . . . I sweated after this nightmare and cried the rest of the night. This situation has devastated my intentions to pay attention to daily activities.

This quote expresses the intensity of suffering after Begum had crossed the border. She did not feel safe in the temporary living shelters. Another participant, Banu, stated being afraid of some people who always peered at her in an inappropriate way: “Some men looked like they were raping me with their eyes. I feared, became restless, and could not pay attention while cooking. . . . Most of the time, I forgot about the sequence of steps to make a meal.”

Banu had difficulty trusting anyone after her experience of genocide in Myanmar, which affected her relationships. She mentioned that her older sister had been raped by eight adults, one after another, and had died before she crossed the Myanmar border. Banu had not experienced deep and restful sleep since she fled.

Like Banu, Ali experienced restless sleep interrupted by mistrust and insecurity: “Look, I have some valuable stuff [shows a gold necklace] here [in his shelter]. I am always afraid of someone stealing my wealth and cannot sleep at all because of a lot of negative thoughts.” As he spoke, he was repairing a fishing net and lost the sequence.

Ali experienced insecurity that was due to his desire to protect his family from snatching (kidnapping) or robbery and was concerned about his adolescent daughters’ safety. He never allowed them to go anywhere alone, and he did not sleep at night as a way to protect them.

For other participants, like Akbor, natural hazards, such as heavy rain, flash floods, and landslides, perturbed their rest and sleep:

Look at the slopes of the hill [because of heavy rainfall, the shelters are vulnerable to being buried by landslides]. We are vulnerable to landslides in this monsoon period. I am very anxious to sleep underneath these hills, and the shelter is not strong enough to protect [against] the wind speed. I completely lost interest in living here.

After sharing this, Akbor took a break from the interview.

Participants often went to bed fearful about what was to come the following day. The lack of peaceful sleep and rest caused them to remain upset throughout the day; lose social connections; become disinterested while performing personal, household, and social responsibilities; and be physically unwell. Complicated daily living activities, such as washing clothes (scrubbing, rinsing, and drying clothes manually), cooking (using firewood), bathing children (using a manual water pump), and regular personal hygiene were intentionally overlooked. Because of their restlessness, the participants would quickly become fatigued and thus would put off daily activities on purpose. For example, Sajib, another participant, said that he takes a shower once a week. Overall, the restless and sleepless nights resulting from mental stress and sociocontextual situations prevented participation in everyday activities.

Theme 2: Adjusting to Inconsistent Daily Activities

Inconsistent daily activities created unique everyday routines. Participants used spiritual healing skills to adapt to the constraints and created a routine in daily activities. Most of the time, female participants collected relief supplies (e.g., rations, kitchen items, fuel) instead of their husbands. The male wait line was longer than the one for women, and men were occupied with income-generating work outside the camps, which was often conducted illegally. Despite the shorter lines to obtain relief supplies compared with men, women had difficulty maintaining daily routines and caring for others because of the time commitment associated with collecting necessary supplies and caregiving responsibilities for children, parents-in-law, and younger siblings. Making eye contact, and speaking boldly, Julekha shared the following:

The ration collection line was hectic and time consuming, preventing returning home early. As a result, the baby stays hungry, and the partner does not have lunch at the proper time. Most of the time, he does not have lunch and stays hungry. How stressful it is! . . . These days, I get up before sunrise to prepare everyone’s food and bring the baby outside in a backpack.

The women took on additional family and household responsibilities, which created extensive hardship and mental and physical tiredness, especially in extreme weather. The hardship presented physically, through muscle and joint pain around the neck, shoulders, wrists, and heels. Nevertheless, women continued to uphold their duties, even if their extended family responsibilities resulted in their own inconsistent daily routines. During time that should be their rest period, women were noted to complete light chores and chat with family members, direct children’s home education, prepare meals, and oversee household items. Lipi started crying after providing this description:

Once, we strived for food when I had a fever, and my partner went fishing in the deep sea without any return notice; there was no one to cook food. . . . I was shocked, messed up, and unable to help. I did not find any meaningful work except praying to God to save my family.

The lack of financial resources in the Rohingya camp limited access to camp-based health care, delivery items, and means of livelihood for those waiting for their refugee identity cards. Refugee participants had much more freedom to access natural and aquatic resources in Myanmar; however, in Bangladeshi refugee camps they were living under conditions of confinement, with limited access to natural resources. Participants reported practicing spiritual activities to adjust to the agitated mindset and uncertainty that accompanied daily activities. As one participant, Roshida, proudly explained, these spiritual activities included praying on time; reciting passages from holy books; and discussing the tragedy, patience, and virtue of their holy prophets:

We have 10 family members in our shelter, and I lose almost all energy in the middle of the day by taking care of children and parents. . . . I found that God is healing me after practicing five-times prayers every day. . . . I do not know how did I get the bits of patience to manage everything.

Overall, participants balanced everyday occupations in their hostile sociocultural environment through adaptation, alteration, and spirituality.

Theme 3: Decreased Occupational Engagement Due to Complex Relationships and Limited Social Roles

Participants mentioned complex relationships, such as mistrust of a spouse, other family members, or neighbors, that affected their ability to perform social functions. Fragmented relationships decreased motivation to care for the self and others, but this could be solved by forming new relationships and making connections in shared roles.

Theme 4: Involvement in Precarious Occupations That Exacerbated Severe Health Risks

A vulnerable living environment and limited social and political opportunities influenced the uncertain and risky lifestyles that the participants chose or experienced. The hunger and demands of children forced parents and caregivers to be involved in dangerous and illegal occupations to provide for their families. Participants understood they were participating in unlawful work, but their helpless situation forced their involvement in such occupations.

Occupational Imbalance

Occupational imbalance is defined as an inability to engage in satisfactorily diverse occupations because of a lack of balance between valued occupations and necessary or obligated occupations (Wilcock, 2006). Some Rohingya women described feeling overly occupied in roles that involved taking care of extended family members and working outside the home. Conversely, others were underoccupied and reported spending their time seeking a job in the local market or lying in bed. Yet both groups were unable to engage in meaningful occupations of choice to achieve a sense of balance and well-being. The perception of an imbalance in everyday life seemed to have the greatest implication for poor health outcomes, such as sleeplessness, drug addiction, tension, and stress or anxiety. A lack of access to health services, food shortages, and a scarcity of shelters further threatened balanced occupation, health, and well-being (Pocock et al., 2017). Given Rohingya refugees’ descriptions of their experiences in the Bangladeshi camps and the subsequent occupational imbalance, it is crucial to promote adequate occupational engagement and participation to prevent the aforementioned poor health outcomes. When occupational balance was not achieved, the refugees initially engaged in inconsistent activities and later participated in dangerous activities, such as stealing, other criminal acts, and illegal work. Through the interviews, we discovered that occupational imbalance was also derived from dissatisfaction in shared occupations that depend on connectedness between couples and other family members. Previous studies conducted with asylum seekers suggest that occupational imbalance can disrupt gender norms, causing one gender to feel powerless and worthless, which negatively affects relationships, health, and well-being (Ingvarsson et al., 2016). This sense of occupational imbalance might be a contributing factor to the wide prevalence of gender-based violence reported in the global refugee literature (Pires et al., 2019).

Occupational Deprivation

This study reflects the sense of occupational deprivation that Rohingya refugees have experienced as well as the value of participation in occupation to provide avenues to reestablish a sense of worth. Occupational deprivation is a state of being prevented from participation in necessary and meaningful occupations because of factors that stand outside the person’s immediate control, such as after a crisis, disaster, or significant displacement (Wilcock, 2006). We captured a crisis whereby the refugees were deprived of health care, food, education, and social support because they were not able to meet their basic needs while living in the camp. Refugees participated in activities that did not have any inherent meaning (i.e., lying in bed, starving for food) and did not have the opportunity to engage in desired leisure activities. Passing most of their time in the refugee camps resulted in limited social networking and support, a poor relationship with their spouse, and excessive anger and stress. The lack of engagement in paid work inside or outside the Rohingya camp created a feeling of being imprisoned in everyday life, which had the personal and social consequences of occupational deprivation and constrained participation in daily occupation. Kielhofner (2008), when discussing the foundations of human occupation, emphasized how a lack of meaningful time use reflects a sense of hopelessness, a deteriorating sense of efficacy, and a loss of control over one’s occupational choices. These themes were reflected in Rohingya refugees’ experiences in the Bangladeshi camps. In addition, occupational deprivation occurred in the context of precarious living conditions that affected refugees in different ways based on gender and age. Men had to engage in illegal work, women increased their caregiving responsibilities, and older adults were deprived of their daily occupations because of environmental hazards coupled with their own limited mobility. Precarious living conditions, such as inadequate food, an inability to feed children properly, not receiving money from partners, a lack of freedom, a fear of being abused at the shelter and outside of it, a lack of leisure and social activities, a lack of treatment facilities, and mobility impairment all played a role in creating conditions of occupational deprivation.

Adaptive Occupation

A key characteristic of adaptive occupation is the use of adaptation to alter or change an activity so that the person can perform it successfully (Mosey, 1986). Nevertheless, prolonged occupational deprivation likely diminishes the possibility of adaptive responses to new or crisis environments (Molineux & Whiteford, 1999). Participants in this research, however, adapted both positively and negatively after experiencing occupational deprivation. The substantial psychological issues resulting from displacement and deprivation could constrain refugees from adapting to existing occupations, especially when living in underresourced host countries. Nevertheless, as a temporary solution refugees altered their daily activities and connected and shared their skills with others. They displayed an eagerness to maintain relationships with their spouse, family, and neighbors by expressing a desire to help others. Previous research has noted that refugees derive a sense of purpose from occupational adaptations that focus on “doing for others” or engaging in altruistic activities (Huot et al., 2016; Smith, 2015). Posttraumatic stress interrupted daily occupations, including rest and sleep, but the refugees adapted by balancing daily activities, sharing roles, and using spiritual healing. Involvement in spirituality was a meaningful part of their everyday routines and one of the positive adaptive responses we noted. Participants used their spiritual beliefs and rituals to heal from dissatisfaction, negativity, and occupational deprivation in a complex sociocultural context.

Because the refugees were struggling to meet their basic survival needs, this study reveals that prolonged occupational deprivation can lead to maladaptive responses, such as involvement in illegal businesses, crimes, deforestation by cutting wood, and selling relief products in the community markets. Refugees’ involvement in maladaptive occupations enabled their families to survive under conditions of extreme deprivation. Some refugees believed their occupational performance was elevated by involvement in illegal businesses because doing so satisfied their family needs and allowed them to fulfill their duties as a father, husband, or son. Involvement in illegal businesses and risk-taking behavior may be defined as a maladaptation as a person attempts to rebuild their occupational identity (Huot et al., 2016). Whiteford (2000) examined maladaptive responses as adverse outcomes or failures to alleviate the negative consequence of occupational deprivation (Whiteford, 2000). However, in the present research we found both positive and negative outcomes of such responses. For example, doing unauthorized work helped fulfill family desires but also carried the risk of punishment by the authorities. Despite the fact that this involvement was unauthorized by the camp authorities, the refugees found an income-generating identity that preserved their happiness and dignity within the family. Therefore, from the refugees’ perspective these maladaptive responses were facilitating their occupational participation. The relationship between occupational balance and imbalance, occupational participation and deprivation, and adaptation and maladaptation is depicted in Figure 1.

OPEN IN VIEWER

Figure 1.

The experience of deprivation, imbalance, and adaptation or maladaptation in occupational participation.

Figure 1 reveals that a lack of participation can lead to occupational deprivation because of a lack of occupations and limited freedom to engage in occupations in an unfavorable environment. Because of occupational deprivation, participants were not able to engage in a variety of preferred and meaningful occupations, thus leading to occupational imbalance. Adaptive responses, such as altering or sharing mutual occupations and spiritual healing, were prompted by occupational deprivation, thus facilitating occupational participation. However, on the basis of research data, prolonged occupational deprivation could lead to maladaptive responses, which is essentially what causes, in part, occupational imbalance. The refugees used their resources, actions, and skills to facilitate occupational participation through adaptive and maladaptive responses. Adaptive and maladaptive occupations emerged from their occupational deprivation, depending on the duration of negative experiences and available resources. Rehabilitation professionals, aid agencies, camp authorities, and governments can all play a role in helping refugees balance their occupational lives, reduce occupational deprivation, and optimize adaptive occupational behaviors.