First-Generation Palestinian Refugees in Jordan: Experiences of Occupational Disruption From an Occupational Justice Perspective

As of mid-2021, there were 84 million forcibly displaced people worldwide (United Nations High Commissioner for Refugees [UNHCR], 2021). Refugees are people who have fled war, violence, conflict, or persecution and have crossed an international border to find safety in another country (Brown, 2021, p. 1). At present, there are more than 5 million registered Palestinian refugees living in Jordan, Lebanon, Syria, the Gaza Strip, and the West Bank (United Nations Relief and Works Agency for Palestine Refugees in the Near East [UNRWA], 2021). Jordan has been home to more than 2 million Palestinian refugees since the first Arab–Israeli War erupted in 1948 after Britain’s withdrawal from historic Palestine (United Nations Office for the Coordination of Humanitarian Affairs, 2017). UNRWA estimates that 370,000 refugees currently reside in 13 Jordanian camps, including the AlBaqa’a camp, established in 1968, which is the largest and most populated. Residents find themselves in a long-lasting and intractable state of limbo termed prolonged or protracted refugee status (UNHCR, 2004, p. 1). Palestinian refugees constitute one of the oldest and largest groups of protracted refugees worldwide. The existing literature primarily focuses on recent displacement crises; little is known about the effects of prolonged social and occupational injustices, leaving a gap to justify the exploration of areas for meaningful intervention. Displacement distances refugees from their typical occupational environments and negatively affects their well-being and belonging (Darawsheh, 2019; El-Qasem, 2019).

The World Federation of Occupational Therapists (WFOT, 2019) emphasizes that displacement indirectly influences engagement in occupational opportunities. Only a limited number of studies in occupational therapy and the occupational science literature have discussed Palestinians’ occupations, including using crafts as a means of cultural expression and resistance and how olive growing facilitates occupational participation despite environmental and political restraints (Frank, 1996; Kronenberg et al., 2011; Simaan, 2017). Occupational therapists work with displaced people because of their belief in occupational justice, which is defined as the right of every individual to be able to meet basic needs and to have equal opportunities and life chances to reach their potential but is specific to engagement in diverse and meaningful occupations (Wilcock & Townsend, 2009, p. 193). In addition, Sakellariou and Pollard (2016) discussed how using a rights-based approach to facilitate participation is central to practice. To frame the present study, we used the occupational justice framework to explore and guide the experiences of occupational disruption.

We used Global South perspectives to supplement our use of the occupational justice framework. The Global South is defined as parts of the world that suffer most acutely from the unjust systemic consequences of combined capitalism, colonialism, and patriarchy. Researchers have highlighted shared experiences of group belonging and resisting layers of structured colonialism as a means of occupation (Ramugondo, 2015; Simaan, 2017, p. 511). This contrasts with the individualistic nature of occupational justice frameworks developed in the West. In 2013, AlHeresh et al. explored and challenged the applicability of occupational justice with the absence of social justice in Palestinian refugee camps in Jordan. Several scholars have studied the applicability of occupational justice and concluded that unique, collective experiences of diverse groups challenge the sole use of typical individualistic occupational therapy practice (Emery-Whittington, 2021; Hammell, 2011, 2017; Ramugondo & Kronenberg, 2013). The use of this framework alone falls short in addressing occupational disruption and a lack of community belonging and collectivism. Researchers have used additional tools applicable to the Global South, such as self-knowledge and occupational consciousness. Occupational consciousness is the constant awareness of the dynamics of power and its effect on daily occupations that affect personal and collective health (Ramugondo, 2015). In this study, the occupational justice framework was supplemented by both the collective self-knowledge of occupational disruption by participants and Rawan AlHeresh’s occupational consciousness and self-knowledge as a Palestinian.

To our knowledge, identifying unique occupational disruptions to the lived experiences of Palestinian refugees in Jordan has not been evaluated. AlBaqa’a community-based rehabilitation (CBR) centers provide an opportunity to learn patterns of prolonged displacement and positions occupational therapists to address refugee health. Thus, in this study we aimed to explore occupational disruptions in the lives of Palestinian refugees to inform practice so as to alleviate patterns of prolonged occupational injustice.

This study was approved by The Partners Human Research Committee, the institutional review board of Partners HealthCare.

Adopting a constructivist worldview, we used a thematic analysis guided by a descriptive phenomenology approach to explore the prolonged lived experience of being a Palestinian refugee, allowing participants to describe their lived experience with the central phenomenon of interest (Sundler et al., 2019). Phenomenology has been widely used to explore the disempowering nature of prolonged refugee status and encourage participants to voice their personal experience of occupational disruption (Darawsheh, 2019; Rodriguez & Smith, 2018; Simaan, 2017, 2020). This design is especially important because of the politically charged nature of narratives commonly associated with the long-term displacement as a result of Israel’s refusal to respect the right of Palestinian refugees to return, as stipulated in the UN General Assembly resolution 194 (III) of December 1948 (Human Rights Watch, 2023).

Thematic analysis has also been frequently used to find patterns of meaning in data (Braun & Clarke, 2006). Thematic analysis based on descriptive phenomenology focuses on the participants’ lived experience through the lenses of the lifeworld. In the lifeworld, experiences are understood in light of physically existing in the world, the physical surroundings, and everyday interactions with others and the milieu. Human experience has intentionality, is born from the world and directed to the world, and must be understood with the world as a background (Dahlberg & Dahlberg, 2020, p. 460). The research process is guided by the researcher being as open and true to the phenomenon as possible, questioning preunderstandings and adopting a reflective attitude. Thematic analysis is inductive and consists of identifying meanings and searching for patterns. These are further explored and organized into themes that encompass both concrete expressions and descriptions of the lived experience (Sundler et al., 2019, p. 736).

After developing themes, we conducted a critical analysis of occupational injustices, including the following:

• ▪ Occupational deprivation: preclusion from occupations beyond one’s control (Whiteford, 2000)

• ▪ Occupational apartheid: denial of permission to participate in occupations on the basis of a group’s characteristics (Kronenberg et al., 2011)

• ▪ Occupational marginalization: lack of opportunity to participate in occupations on the basis of invisible societal norms

• ▪ Occupational imbalance: inequitable distribution of opportunities in occupations

• ▪ Occupational alienation: imposition of no meaningful occupations (Stadnyk et al., 2010)

Because reflexivity is essential for a constructivist approach, the authors reflected on the influence of researchers’ roles and assumptions on this study’s sampling, data collection, and data analysis methods. The first author (Alyssa A. Fabianek) was an occupational therapy trainer in a CBR center in AlBaqa’a. AlHeresh has worked in Palestinian refugee camps for more than 15 yr and identifies as a Palestinian refugee–occupational therapist. Our knowledge of Palestinian refugees’ experiences allowed us to explore the study participants’ statements using a shared language. Each transcript was examined to ensure that the questions were open ended and allowed for the expression of a wide range of opinions. During the data analysis process, we met periodically to discuss and reach a consensus on the emerging themes. An external qualitative researcher provided feedback on the research design, data collection process, and data analysis to ensure examination of the research process from multiple perspectives.

Fifteen participants were recruited through purposeful sampling, including social media and word of mouth, from both an AlBaqa’a CBR center and community-dwelling refugees, because the needs of each present differently (Al-Rousan et al., 2018). Geographic representation from camp and noncamp settings was sought to support transferability. Each participant identified as a Palestinian refugee born in Palestine, remembered living and being forced out of Palestine, and was residing in Jordan. All participant names in this article are pseudonyms, to protect identities.

The questions that guided the interviews that helped us explore topics around the experiences that participants deemed most important are listed in Appendix A. Focus areas were further explored to maximize the amount of information obtained about key themes.

During the initial eligibility screening, and before interviews, participants were reminded that participation was voluntary and that they could discontinue at any time. Verbal consent was obtained because this study was determined to be low risk.

The two primary data collection methods were one-on-one interviews and, if a household had more than one eligible participant, group interviews. We conducted 10 individual interviews and 2 group interviews, one with two participants and one with three participants. All interviews were conducted in person by Alyssa A. Fabianek and an Arabic-speaking certified Arabic–English translator. Two interviews were conducted in English, and the remaining 10 were conducted in Arabic. Each interview lasted between 30 and 90 min. All interviews were audio recorded using a voice recorder and took place in a private room in either the CBR center or participants’ homes. As compensation for their time, each participant received a gift card valued at 10 Jordanian dinars (∼$14).

The certified translator translated and transcribed recordings verbatim to English. AlHeresh, a bilingual Arabic–English scientist, reviewed the audio recordings and transcriptions to ensure accuracy. Using an inductive approach, all documents were read and reread by Fabianek to ensure familiarization with data. Meanings were identified by exploring how the phenomenon of interest was experienced and narrated by the study participants and described textually. The meanings were then organized into patterns by comparing the differences and similarities between them. Through immersive reading and reflective writing, Fabianek aimed to deepen the understanding of meanings and patterns from the lived experiences to develop themes. Throughout the process, she strived to maintain an open mind, be attentive and sensitive to the participants’ lived experience, and continuously questioned the understanding of the data against her own assumptions. AlHeresh checked the identified meanings, patterns, and themes. Periodic debriefings with all researchers took place to reach a consensus to ensure credibility of the findings. Saturation was reached when additional data did not lead “to any new emergent themes” (Given, 2016, p. 135). After the data analysis, Fabianek discussed the research process and findings with Claudia A. Rosu, a qualitative analysis expert, to ensure confirmability of the findings through peer debriefing. All data analysis was completed in NVivo (Version 12.3.0).

Fifteen Palestinian refugees participated in this study (Table 1). In total, 12 subthemes (see Appendix B), leading to four main themes, emerged from the data.

When asked about life in Palestine, participants remembered the beauty of Palestine, the land, nostalgia, and a sense of identity and community. All emotionally described their hope to return and assumed their refugee status was temporary. Ahmed shared the following:

Fatima stated, “There is no place like Palestine. Springs flow from the ground. Springs [are] everywhere; you drink fresh raw water straight from the springs. Valleys, orchards, gardens, everything is green. The whole land is fit for cultivation; it is agricultural land.”

Most found it humorous to be asked about personal strength, because they were older, with several health problems, and did not consider themselves physically strong. A few mentioned occupational contributions, including embroidery. Their children, however, who were at times present during interviews, listed admirable qualities on their behalf, highlighting their upbringing, financial skills, and sensibility. Participants believed their strengths lay in their relationship with God, their children, and other family members, and their Palestinian heritage. They took pride in the sacrifices they made to get their children into university. Abudullah provided this description:

The pride that Palestinians have in their people and their country and that has been sustained over decades was echoed in each story. Many personal and community-based strengths had helped them to excel in things that were within their control, such as an education for their children and the upbringing of their families. However, their ongoing hope to return, while facing continuous displacement, indicates occupational deprivation and alienation from their heritage, identities, communities, and land.

Participants described leaving possessions—everything they owned—behind, losing family, and having war memories regarding leaving Palestine. Most remembered when they first heard how the war started or saw soldiers and planes invading with their own eyes. Everyone fled quickly in fear. Rowaida recalled, “We carried nothing, except clothes covering our bodies out of fear; planes above your head, you know; it was scary. I lost everything, my house, my furniture, my land . . . even farms; everything was left behind.”

The most agreed-upon and traumatic experience was losing family. Participants described loss, first as they fled their homes or witnessed the death of relatives during violent attacks, or later learning of the death of those from whom they had been separated. Khawla stated, “Everyone went in a different direction, and then they would start searching for the missing ones. . . . Those who did not escape together lost each other; they were displaced, some here and some in Jordan.” One participant tearfully shared that he had lost four family members and could not say his last goodbyes or attend their end-of-life services.

Everyone had unique memories. However, they all similarly described how quickly Israeli forces took over their homes, their fear of facing similar violent events in neighboring villages, and the exhausting journey by foot to Jordan. Mariam described, “Before we left, Dair Yassin’s massacre had taken place where they raped women and committed atrocities against residents. We fled because villagers feared [that] girls and women [would] be raped.”

These detailed accounts of fleeing Palestine highlighted the fear tactics and violence used to intentionally displace Palestinians from their homeland and valued occupations, leading to occupational deprivation and occupational apartheid.

When asked about challenges and coping strategies to start life in Jordan, participants talked about poor camp conditions, decreased opportunities for work and education, lack of finances, waiting in long lines for necessities, living in a tent or mosque, and limited relationships with neighbors. Mariam described, “We had a hard time getting chores done. We used to stand in long queues to get water from water tanks. Same for little gasoline. . . . As for food rations, we had to wait for two or three days.”

A typical story was sacrificing money to send children to university in the hope they that would get better paying jobs. If one had no college education, they would turn to farming, but this furthered debt. Men moved to other countries to support their families. Ruqaya stated, “Old men and women stayed in Jordan while their sons and daughters went to Kuwait to support them. Those who were educated before coming to Jordan got jobs easily.”

Another challenge was the lack of community and relationships after displacement. Most participants reported that their neighbors were respectful and knew everyone had faced adversity. However, they kept to themselves and felt they had to face challenges independently. Fatima stated, “Only God knows what I am like; I never interfere in other people’s affairs.” This stands in contrast to the descriptions of their social support in Palestine, highlighting happiness and an increased sense of community. These challenges are a mixture of prolonged occupational deprivation within their camp environment, occupational imbalance by self-sacrifice through physical labor and cutting back on food, and occupational marginalization that limited their sense of community and relationships beyond the walls of the refugee camps.

When asked about the meaning of being a refugee, responses included discrimination, health issues, and negative emotions. Contrary to Palestinian pride, being labeled a refugee came with negative connotations. Discrimination can be broken down into occupational marginalization and occupational apartheid, as evidenced by their experiences since displacement. Despite the ability to become citizens in Jordan, participants described discrimination in forms of mockery, shaming, and accusations; however, they distinguished that the problem was not with Jordanians but with policies and structures in place. Mariam shared her experience:

Others spoke of health issues, which affected self-esteem, self-perceived efficacy, finances, ability to work, social relationships, and physical disabilities. Mariam continued,

Palestinians harbor negative emotions because of their prolonged refugee status and internalized prejudice. The words participants used included sensitivity, sadness, misery, heartbreak, suffering, agony, abandonment, and weakness. Many cried telling their stories because they rarely discussed their memories and feelings and described how these questions brought back strong emotions. For example, a wife, husband, and sister-in-law participated in a group interview in the presence of three daughters who heard these stories for the first time. The participants admitted disclosing such intimate details of displacement and consequences with others. Khairyeh stated, “To be a refugee is a lasting heartbreak. Even if you’re settled down, you still feel abandoned.”

The experience of enduring prolonged refugee status has given this strong, passionate, and motivated group a degree of internalized prejudice. This can be attributed to their ongoing experiences of occupational injustice in their host country, which could affect how occupational therapists intervene.

In this study, we examined, by interviewing first-generation Palestinian refugees in Jordan, occupational disruptions among people who identified as protracted refugees. Social and occupational injustices have persisted even after more than 70 yr of displacement. Participants revealed occupational injustices that we categorized into four themes: (1) Palestinian pride, (2) trauma leaving one’s home country, (3) challenges of living in a host country, and (4) internalized prejudice. Because occupational therapists have a crucial role in facilitating meaningful engagement, we propose using the existing occupational justice framework and expand it to include the collective shared experiences of groups, such as those of Palestinian refugees, to guide meaningful and relevant interventions.

WFOT recognizes an occupational therapist’s role in advocating for those experiencing barriers in occupations. Prolonged refugees face occupational injustices and the denial of returning to their historic homeland based on their characteristics (i.e., Arab–Palestinian Muslim or Christian). WFOT (2019) recommends integrating occupational justice into practice while working with refugees. Our findings build on these recommendations for addressing occupational injustices even after decades of societal integration in host communities. Occupational deprivation has a long-term impact on individuals and communities (Wilcock & Townsend, 2009). Palestinians face environmental, societal, and personal barriers. The impact of deprivation is anticipated to be greater with prolonged refugeeism because of cumulative effects over time (Huot et al., 2016). Systems and institutions must consider prolonged cultural variance to reduce occupational deprivation and prevent further declines in health (Lebano et al., 2020; Mirza, 2012).

Many participants feel their only option for the future of their families is to choose to prioritize monetary resources for education over basic health needs, such as food. Participants reported financial hardships, with disproportionate amounts of time spent looking for jobs. They engaged more heavily in education to lift up the whole family in the hope of addressing inequities at a societal level. This suggests collective occupational engagement, reflecting an intention toward a common good through social cohesion among coherent groups of individuals and communities in everyday contexts (Frank, 2017).

WFOT and the current literature emphasize the importance of policy and legislation relevant to rights for meaningful services for refugees (Maroney et al., 2014; Smith et al., 2014; WFOT, 2019). It is essential to consider culturally appropriate services to address occupational injustices (Darawsheh, 2019; Maroney et al., 2014). More representation from Global South groups is needed because they are still suffering from the aftermath of systems structured on colonialism. Occupational therapists need to address both collective occupations among groups as well as more typical, individualistic interventions (Simaan, 2020). At present, occupational therapy services in the AlBaqa’a CBR center are conducted in a community-based setting individually and in groups. One academic–community partnership program in Jordan, Toward an All-Inclusive Jordan, focuses on occupational therapy intervention among refugees in community-based settings and sets community-based goals that are based on the refugees’ communities’ priorities on an annual basis (AlHeresh & Cahn, 2020).

Refugees often face legal barriers and a lack of country-specific qualifications that may persist over time. Although WFOT and Western nations emphasize reestablishing roles, especially in work and productivity, this is impossible in many countries. For example, refugees in Lebanon are unable to attend school, buy property, or obtain ownership rights (Kitamura et al., 2018). Social participation needs to be realistically and meaningfully integrated to prevent isolation and occupational apartheid. Protracted refugees face, and will continue to face, many physical, psychological, and societal barriers to meaningful occupations. Occupational therapists need to address both individual needs for social participation, education, work, and finances and group needs, collectively, to achieve occupational justice. With the absence of social justice safeguards, occupational disruptions and violations of human occupational rights will continue to persist worldwide.

This study has some limitations. Older age and health limited participation for some, requiring home visits. Family participation was culturally appropriate and proved to add value to interviews but may have resulted in limited details shared because of privacy concerns. The use of translation may have affected how questions were asked and how information was perceived and may have missed nuances. Researcher bias may have affected findings. To reduce bias, the interviewer consulted with investigators regularly during each level of data collection and analysis. Last, because of the risk of informant bias, we ensured that informants understood every question by keeping accurate field notes and comparing results with others.

Protracted refugees experience occupational apartheid, deprivation, injustice, and alienation, and they can benefit from occupational therapy services even after decades of acculturation. With the absence of social justice, occupational disruptions and violations of human occupational rights will continue to persist worldwide. Occupational therapists should address individual and group needs to achieve occupational justice through recognizing the layers and complexity of occupational engagement of refugees and by being open to finding meaningful interventions by relying on cohesion and shared experiences.

This study reveals that occupational deprivation and injustices persist even after decades of displacement. Our participants’ productivity was compromised because of occupational imbalance, and social participation is an area of much-needed intervention. In addition, participants demonstrated pride in their homeland and their heritage that helped them maintain resiliency in the face of prolonged occupational injustices. These data support the idea that occupational therapists have a vital role in discovering meaningful occupations to counteract daily occupational and social injustice. Further research is encouraged with this population and with younger generations, with an additional focus on unique facilitators and strengths to occupational participation to combat these injustices.

Protracted refugees face many physical, psychological, and societal barriers to meaningful occupations, such as, for our participants, social participation, education, work, and finances. With our findings and WFOT (2019) guidelines, occupational therapists can enable optimal participation in daily occupations while considering collective occupations among groups. Many calls for action have been published, encouraging more research in addressing needs of refugees (Saadi et al., 2021). As occupational therapists, we can translate calls for action into reality. We can address some aspects of social justice if we plan and implement refugee programs that are mindful of occupational injustices to the individual, the environment, and society.

We thank all of the participants and dedicate this work to those who died before publication; we will always cherish their contribution and stories. We also thank Ola Hiyari, the community-based rehabilitation workers and volunteers at the AlBaqa’a camp, and Mohammed Nazzal for their support and contributions.