“Nothing about us,without us”: Conducting participatory action research among and with persons with disabilities in humanitarian settings

The consultative planning process

An extensive consultative planning process was undertaken during the first year of the project. This phase sought to engage local humanitarian and disability stakeholders, as well as the affected communities, in the research design and implementation.

Consultative trips were conducted in each country to identify interested stakeholders in the project, and their interests or priorities. This included identifying organizations of persons with disabilities (DPOs), which may have had limited contact with refugees and/or humanitarian actors in their previous work, but were interested in expanding both their alliances and advocacy into this field in the future. Group activities—including with the use of photos—were tested among Bhutanese refugee women and men with disabilities during the consultative trip in Nepal, informing the study design and what activities and accommodations appeared to work well among persons with different types of disabilities. The photos and illustrated cards were used as job aids for safety mapping and sorting activities.

A major outcome of the consultative trips was the establishment of an advisory group comprising of DPOs, non-governmental organizations (NGOs), UN agencies, and representatives of refugees with disabilities, as well as identification of co-investigator organizations that could assist with securing local ethics approval and provide onsite support and expertise. Collectively, the advisory groups informed the study design and instruments, which were approved for implementation by the respective local ethics review boards. The advisory groups also played a role later in the project, in the formulation of recommendations, which were then documented in country-specific reports and disseminated to participants and the community by the partner agencies (Tanabe, 2014a, 2014b; Tanabe & Nagujja, 2014).

Establishing an inclusive research team

The WRC worked with refugees and persons with disabilities as part of the study team in each study location, benefiting from their knowledge and expertise, and strengthening local capacity for future research. The WRC and co-investigators recruited 12 data collectors in each site, from pre-existing refugee programs or DPO membership. In Kenya, data collectors comprised refugee youth who had attained a certain degree of secondary education; in Nepal, they comprised persons with disabilities from DPOs and their assistants; and in Uganda, consisted of refugee adults and youth, some of whom had physical disabilities. Prior experience with research around sensitive topics was not required, opening opportunities for those looking to learn new skills through training, practice, and mentoring throughout the project.

All data collectors—regardless of previous research experience—participated in a three-and-a-half- to four-day training on human subjects research; SRH topics; appropriate communications skills per type of impairment; facilitation and recording skills; consent/assent processes; ethical data handling; and referral pathways to existing health, protection, and psychosocial services. The trained interviewers then piloted the study instruments and tools before they engaged in actual data collection. The feedback they provided around the instruments and activities were reflected in data collection processes. Team members were also able to use this pilot to define the different roles and responsibilities in the data collection team, based on their unique skills. The WRC and co-investigators provided further support and reviewed skills throughout data collection, particularly during daily debriefing sessions.

Participant recruitment

The study team implemented activities among women with disabilities (20–49 years); men with disabilities (20–59 years); and adolescent girls and boys with disabilities (15–19 years) who were divided by sex and age into four categories based on their functional ability to communicate:

Refugees with physical, vision, and mild psychosocial impairments;

Participants were further segmented by language. In Kenya, refugees with disabilities were invited to participate if they could communicate in Somali, Kiswahili, Arabic, English, or Somali sign; in Nepal, Nepali and Nepali sign; and in Uganda, Swahili, Somali, Kinyarwanda, or Luganda sign.

Potential participants were identified via refugee registration and NGO lists where available, or through snowball sampling by agency staff, community leaders, community health workers, and families of persons with disabilities who knew of other refugees with disabilities in the community. Awareness raising involved informing potential participants about activities through informational fliers in large font and Braille. The multi-pronged outreach strategy facilitated the identification and recruitment of participants who may otherwise not have had the opportunity to learn about the study.

Ongoing, interactive consent process

Only those participants that consented were permitted to participate in activities. Verbal consent was sought in Nepal and Uganda, while written consent was sought in Kenya; the latter per the local ethics review board instructions. Consent was described and offered in all languages used by refugees and in which the study was conducted, including the respective sign languages. Per national laws, minors (15–17 years) were asked to assent, and a parent or guardian was asked to provide permission.

Participants had three opportunities to learn about activities, ask questions, and decide if they wished to be a part of the data collection process:

During awareness raising in the community and through home visits;

An interactive advance consent/assent process was included during participant recruitment to facilitate more effective communication of information and establish participant understanding of their involvement in the activities. This method was primarily used with persons who identified as having an intellectual impairment. As applied in other SRH-related studies among persons with disabilities (Handicap International Ethiopia, 2012), once objectives and the process had been explained, a member of the study team asked the following questions:

What will we be talking about in the activity?

Potential participants were required to answer questions one and four correctly. If they did not, but still expressed interest in participating, caregiver or family member permission was sought.

During the time of the actual activity, onsite consent was obtained again before any activity proceeded. This step was incorporated to ensure that participants had another opportunity to further understand the activity and to opt out if they wished. For activities among persons with intellectual impairments, the facilitator repeated the same questions from the advanced consent process, plus two additional questions:

When would I have to tell someone else what you have told me?

Potential participants were required to answer questions one, four, and five correctly, and a “yes” needed to be obtained for question six from every person in a group setting. This multi-stage, interactive consent process facilitated dialogue, enabling the study team to appreciate the degree that persons with intellectual disabilities understood what was being asked of them, as well as their willingness to participate in the research.

All participants were informed of existing health or psychosocial services if they revealed recent experiences of violence or requested additional information and services. The referral system built on co-investigators' existing networks and partners. Contact information was also provided to participants and their families, should they have questions or wished to receive information at a later time. Participants (and any accompanying caregivers) were reimbursed for transport costs where applicable. These processes were very much appreciated by refugees with disabilities and their caregivers.

Group discussions with participatory activities

The study used qualitative, participatory methods. Sign language was provided where participants had hearing impairments, while activities for refugees with mild intellectual impairments were simplified as necessary.

Based on the literature review and the consultative planning process with the study's advisory groups, the selected participatory activities for use in group activities ultimately included body mapping, ¹ timelines, ² and sorting ³ to explore knowledge of the reproductive system and fertility; community perceptions surrounding refugees with disabilities and their SRH; barriers to accessing information and services; perceptions around different types of treatment; and risk and protective factors (International HIV/AIDS Alliance, 2006). Group activities began with general questions before moving to sensitive issues, and participants were encouraged to share collective experiences and refrain from disclosing individual experiences.

A case study from Nepal

In Nepal, the study was undertaken in Beldangi Refugee Camp (I, II, and Extension) in Damak, where Bhutanese refugees have resided for more than 20 years. At the time of the assessment, active resettlement was underway for many of the refugees. In this site, the WRC recruited six Nepali data collectors (four women and two men) and two Nepali sign interpreters from the National Disabled Women Association (NDWA), the National Federation of the Disabled Nepal (NFDN), and its affiliate partner, Damak Disability Helping Committee (DDHC), from Damak and Kathmandu. The core six-person team comprised persons with disabilities—two blind persons (one female and one male), one deaf woman who also had a visual impairment, and three persons with physical impairments (two females and one male). The full team consisted of 12 persons in total (six researchers and six supporters).

To maximize data collector participation, the study coordinator asked data collectors to share their desired accommodations in advance. The most common reasonable accommodation for data collectors was the provision of personal assistants and sign language interpreters to translate during the training and assist during data collection. Taking into account the distance to the camp from Damak town and governmental restrictions on the number of vehicles entering the camp, the study hired two vehicles to cover movements for 13 persons (including the WRC study coordinator).

Training and study instruments were printed in Braille and provided in accessible electronic formats for data collectors using screen-reader devices. Both methods were made available given the data collectors' varying levels of prior technological access, familiarity, and personal preference. Additionally, one data collector used a “talking pen” with recorded sound stickers affixed to the safety mapping photos and “treatment” cards. This data collector recorded the predetermined written text into each sticker, which could then be read through a “talking pen” device when placed over the sticker. Different shaped stickers were also placed on the back of the anatomical cards in the body mapping exercise for the other blind data collector to distinguish the cards. The actual anatomy was drawn using tactile ink, which gave the drawings a three-dimensional feel.

As persons with disabilities have unique skills and capacities and a wealth of personal experience in trialing different accommodations for a variety of activities, the WRC study coordinator relied on data collectors to advise on necessary and helpful accommodations, and created space for them to make further suggestions for improvement throughout the process. The training, in particular, consisted of time to adapt facilitation techniques to ensure that all data collectors—especially the core team—could confidently and effectively lead and facilitate group activities. In addition to the note taker role, which was often undertaken by personal assistants, a “supporter” role was created to assist the female blind and deaf data collectors. The supporters provided photos and cards to the facilitators, as well as placed them in their sorted categories during activities.

The data collector training focused heavily on basic SRH knowledge, as well as facilitation skills. Most data collectors possessed only basic SRH knowledge, as this subject had not been taught thoroughly in school. The training was particularly challenging for the deaf data collector, since some SRH terms, such as “menstruation,” did not exist in Nepali sign. Review sessions were incorporated using projected visual diagrams of the reproductive anatomy for the deaf data collector, and the data collectors who are blind traced the tactile ink-based body maps with their fingers.

During practice and pilot sessions, the team noticed that data collectors who are blind faced particular challenges in appropriately interpreting pauses and silences. While participants often appeared to be pondering responses, these data collectors would occasionally move to the next question. To address this situation, the blind data collectors asked that the “supporter” would tap their knees if they spoke too quickly or when the participants were ready to move to the next question.

Various forms of sign were used by participants in the camp, as not all participants had attended the same sign language classes and some used forms they had developed with their caregivers. Some individuals were also hard of hearing. To facilitate group discussions, one main facilitator spoke loudly for the hard of hearing and the information was signed simultaneously. Other signing data collectors then interpreted in various forms of sign, so that participants who missed the main facilitation could still understand. The floor was then opened for participants to respond and discuss. Ensuring only one participant spoke/signed at a time, the main facilitator picked up each contribution and repeated the response in sign for other signing data collectors to re-interpret in alternative forms. Further, as is common practice with sign interpretation, the study rotated interpreters throughout these sessions, which were roughly three-and-a-half hours in length (including one break). This strategy, while logistically challenging, successfully facilitated discussions between participants and gathered information from all of those who were involved.

Prioritizing process over outcome

In this participatory action research project, the consultative planning process was critical to fostering the participation and empowerment of affected communities, humanitarian actors, and DPOs. Across the two-and-a-half-year project, the consultative planning phase took one year, highlighting the need to prioritize adequate time and resources to the earlier stages of research scoping and design. Feedback from advisory group members as well as data collectors through the training, pilot, and participant recruitment proved an invaluable mechanism to localize the study, confirm the effectiveness of ethical processes, adapt techniques to broaden reach and participation, move beyond a medical model, and ultimately strengthen the action potential of the research itself. It fostered respect for the expertise of individuals with disabilities in both guiding the process and defining the accommodations required. The studies were conducted in succession, enabling the WRC to reflect and learn about strategies, with the third study in Nepal being the most inclusive and participatory.

The consultative phase additionally fostered collaboration and power sharing. It enabled the WRC to identify the priorities and interests of stakeholders involved in SRH programs in humanitarian settings, promoting ownership over the findings and recommendations which they could later operationalize in their own programs. Lastly, this step identified local networks of persons with disabilities—perhaps previously less engaged with refugees—from whom the WRC and co-investigators could draw knowledge, advice, and build partnerships for implementation of the research.

The value of mixing persons with different types of disabilities

With different impairments represented in each group, participants themselves were observed to help each other understand and take part in the activities. For example, adolescent girls in Uganda made sure their peers who are blind had enough time to feel the anatomical silhouettes, and participants in all sites brought materials closer to those with mobility impairments. Even the data collectors showed surprise by the level of active participant responses; one data collector commented in the WRC's post-study evaluation form, “All persons with disabilities responded with great answers—far better than expected—and their capability developed.” The participatory nature of the activities offered fora for dialogue and collaboration between participants whose social interactions were often limited.

Having data collectors with disabilities also raised awareness among the refugees with disabilities about different types of disabilities, and the needs, skills, and capacities of individuals with disabilities. For example, youth participants in Nepal—especially boys—shared excitement over the “talking pen” used by the data collector who was blind, and were keen to see it used in action. While technological means may be limited in the Bhutanese refugee camps in Nepal, the exposure to new technologies appeared beneficial in the wake of resettlement, when refugees with disabilities would likely have access to more technological opportunities.

Recognizing the different forms of participation

Despite positive experiences, the WRC acknowledges that not all interested refugees with disabilities could be engaged directly in data collection activities, especially those with profound communication impairments. Where direct communication could not be established with individuals with disabilities, data collectors consulted with caregivers through focus group discussions and home-based interviews. In Uganda, some refugees with disabilities and their families were living in such marginal circumstances, with few opportunities to be heard, that families sought every opportunity to participate in hopes that their concerns could be voiced. Short conversations were conducted with several individuals with disabilities and their families, if options for more formal participation were not feasible. While conversations were excluded from the data analysis, this approach enabled these individuals and their families to meet stakeholders—in particular, agency staff servicing refugees with disabilities—to learn more about available services and influence recommendations. Hence, the participatory action research methodology lends well to collective research and action planning with particularly marginalized groups.

Untapped strengths

Engaging persons with disabilities as part of the data collection team in Nepal highlighted the many unique skills and capacities they have to contribute to research activities. During the debriefing sessions, data collectors who are blind were able to recall participant dialogue with greater accuracy than nonvisually impaired note takers who relied on their handwritten notes. Owing to the pace of some of the dialogue, note takers wrote shorthand. Comprehensive notes were later compiled during the daily debriefing sessions through relying on their notes, the notes of other note takers and supporters who were present during group activities, and the memories of data collectors who are blind and able to recall entire dialogues very accurately. Although note takers were present in every session, the study learned the great potentials of working with blind facilitators, especially where information sensitivity could challenge the use of voice recorders. A second untapped strength that the study observed was the ability of persons with disabilities to engage and relate with participants with disabilities, creating a safe and open environment for dialogue. The mere presence of the data collectors with disabilities served as an excellent icebreaker.

Reasonable accommodations

Most accommodations for data collectors were inexpensive, since they were accustomed to making adaptations within available means in their daily lives and could suggest what they needed to work effectively on the team in these contexts. Braille translations, the “talking pen” stickers, tactile ink, and other stickers were marginal costs relative to other study costs. Further, data collectors brought their own assistive devices that they used on a daily basis at no additional cost to the study itself. The most costly accommodations were travel and time for personal assistants and vehicle hires. Post-study evaluations completed by the data collectors revealed that personal assistants and vehicles were also the most appreciated accommodations. “The provision of transport helped us tremendously,” was a common comment received from the data collectors. Reasonable accommodations are often individualized and contextually specific, and as such, it is not necessary for researchers and humanitarian actors to be disability experts. The study demonstrated that they merely need to consult with persons with disabilities and provide opportunities for them to trial different strategies.

Rethinking empowerment

The daily debriefing sessions with data collectors provided opportunities for collective reflection and improvement. Data collectors were observed to compliment or suggest to each other strategies to perform better as a team. One of the data collectors from Nepal wrote in the end line evaluation form: “The study was very inclusive in nature …. That was the beauty of the collective work.”

Some data collectors in Nepal also invited parents and family members to briefly sit in a debriefing session, highlighting that the opportunity to play a critical role in the research process was an important personal achievement to be shared with others. Further, the last day of field implementation was devoted to preliminary group data analysis in the morning, and a presentation to stakeholders in the afternoon. All data collectors were present during the group analysis, where they discussed common themes and issues for presentation to stakeholders, including the United Nations High Commissioner for Refugees (UNHCR) and Association of Medical Doctors Asia (AMDA) staff. Every person presented different sections of the findings and recommendations at the workshop. Through this activity, data collectors had an opportunity to interact with program staff in a position to implement their recommendations, contributing to advocacy efforts (Pain, Whitman, & Milledge, 2011).

Continued challenges

Despite efforts to make reasonable accommodations throughout the research, there were several challenges that could not be addressed within the scope of the project, but were brought to light for future advocacy efforts of partners. One was the limited accessible infrastructure in the camp itself, which was beyond the control of the study. No accessible toilets were available for refugees or data collectors, and while one data collector brought a portable toilet, the toilets in the camp were not spacious enough to accommodate the person's needs. Concerns about the noise level during activities—from concurrent sessions, outside sounds, and rain—were also raised by several data collectors who preferred quieter environments, which were nearly impossible to secure in the camp. Such challenges sometimes overshadowed other efforts to be inclusive in the research.

Further, some of the challenges already noted about different forms of sign interpretation and the lack of SRH terminology in Nepali sign may have limited the full and effective participation of deaf data collectors and participants. Conversely, the research provided an opportunity for them to learn more about these concepts, which will hopefully stimulate further dialogue within the deaf community on these sensitive, but important topics.

Finally, more creative strategies were necessary to ensure the full and equal participation of persons with intellectual disabilities in the research project cycle, since none of the data collectors in this particular study had a known intellectual impairment. Conversations with participants with more profound impairments in their homes were also limited to basic health and safety topics, but prolonged contact on several occasions may have afforded opportunities to delve into more sensitive SRH topics without jeopardizing the safety of participants. Extensive literature from developed settings in particular confirms the need for, and provides guidance around, ensuring the equitable inclusion of persons with intellectual disabilities for more inclusive, participatory, and emancipatory research (Bigby, Frawley, & Ramcharan, 2014; Strnadová, Cumming, Knox, & Parmenter, 2014).

From research to action

To close the research to action loop, the WRC and partners have developed country-specific technical reports on findings and recommendations, and participant reports that have been translated into all languages employed in each site as well as in Braille (Tanabe, 2014a, 2014b; Tanabe & Nagujja, 2014). The documents received feedback from advisory group members and some data collectors, and were disseminated to participants and the community by the partner agencies.

DPO members in Nepal have since provided further technical assistance to UNHCR around disability inclusion, and the research has fostered interest and dialogue on refugee inclusion in national disability advocacy. In Uganda and Nepal, Refugee Law Project and UNHCR have eagerly operationalized findings and recommendations in their respective settings, especially for adolescent girls with intellectual disabilities.

In retrospect, some aspects of the project methodology could have been strengthened to follow a more participatory action model, especially following data collection (Pain et al., 2011; Walmsley and Johnson, 2003). Despite workshops at the field level for preliminary analysis and dialogue, the WRC conducted much of the analysis on NVivo, which therefore limited the involvement of the wider community in this step of the research. With the end of funding, the WRC has not been able to conduct follow-up visits to evaluate improvements in SRH programming at the community level. Based on learning from this exercise, to be truly participatory, the WRC aims to embark on projects where inclusion through to advocacy is incorporated from the start of planning processes.