Table of contents:
Chapter 2: Methodology
The study adopted a qualitative research design comprised of two phases. Phase one of the study sought to examine government policies and data on institutionalized persons with disabilities using the following research methods: (1) a desk review, (2) structured telephone interviews with public officials from 18 Arab countries (Appendix 1), and (3) structured telephone interviews with directors of two residential institutions in each country (Appendix 2). The second phase of the study aimed to investigate the living conditions in institutions through case studies of two residential centers for persons with disabilities, one in Jordan and another in Lebanon. In each case study, the research team conducted the following research activities: (1) individual face-to-face interviews with five residents, (2) individual face-to-face interviews with the heads of the institutions, (3) individual face-to-face interviews with three parents, (4) two focus group discussions with caregivers, and (5) an hour-long non-participatory semi-structured observation in each institution. The following section contains a more detailed description of the instruments and research activities carried out in the two phases of the study.
Phase 1 Instruments
Desk review
The desk review drew on official reports, academic articles, official statistics, unpublished government reports and studies by international agencies.
Structured telephone interviews with public officials
Though the study targeted institutions and public officials in 18 countries, the research team was only able to successfully reach and conduct interviews with officials in 13 countries (Bahrain, Iraq, Jordan, Lebanon, Mauritania, Morocco, the Sultanate of Oman, the State of Palestine, Qatar, Saudi Arabia, Syria, Tunisia, and Yemen). Through these interviews, the research team sought to identify the number of residential institutions currently operating in each country, their regional distribution, the type and level of government support provided to institutions, and current governmental policies regarding institutionalization. The research team also inquired about the rates of institutionalization, including trends related to age, nationalities and disability types.
Structured telephone interviews with heads of institutions
The research team was able to conduct telephone interviews with the directors of 19 institutions in 11 countries (Egypt, Iraq, Jordan, Lebanon, Libya, the Sultanate of Oman, State of Palestine, Saudi Arabia, Tunisia, United Arab Emirates, and Yemen). Directors were selected to include a variety of institutions across sectors (i.e., private for-profit, private non-profit, public) and accommodation of persons with different types of disabilities (e.g., physical, intellectual, etc.). These interviews aimed to provide insight into the living conditions within residential institutions, with a focus on available services, opportunities for education and employment, and community integration measures.
Phase Two Instruments: Case Studies
Two case studies were carried out in Jordan and Lebanon. The criteria for selecting the institution in each of the two countries included: residence provision, the hosting of foreign nationals, coverage of a range of disability types, and inclusion of males and females of all ages. Fieldwork in each institution involved observation (Appendix 3), and interviews with persons with disabilities (Appendix 4), parents and families (Appendix 5), caregivers and specialists (Appendix 6), and the heads of the institutions (Appendix 2). The desk review informed the development of the interview questionnaires for persons with disabilities, caregivers, and parents of persons with disabilities in the two country case studies.
Persons with disabilities were selected randomly for interviews, across sex, age and disability types, provided they were 18 years of age or older and were receiving residential disability-related services. Interviews took place in private spaces to ensure participants could express their perceptions without any outside influence. The research team took measures to ensure that no one was coerced to participate. The interviewer clarified to participants that participation was not mandatory, and then took consent orally. Participants were reminded that the purpose of the interview was not to scrutinize the institutions, but rather to identify areas in which services could be improved.
The research team was able to interview only those with physical impairments, mild and moderate intellectual disabilities, autism spectrum disorder and sensory disabilities. In a few cases where it was possible to carry out interviews with persons with severe disabilities, the resident was joined by his/her caregiver or an interpreter for people with hearing and speech impairments. The team selected residents with different durations of stay in order to better understand the impact of institutionalization on their overall condition, attitudes and expectations.
Interviewed parents were selected by institutions based on the length of residency and severity (mild, moderate or severe) of disability of their resident family member. Caregivers were selected based on the type and duration of stay of the resident they care for. See Table 1 for a more detailed overview of the case study interviews.
| INTERVIEWS WITH RESIDENTS(Total of 10 interviews) | INTERVIEWS WITH PARENTS(Total of 6 interviews) | FOCUS GROUPS WITH CAREGIVERS(Total of 4 focus groups) | INTERVIEW WITH THEHEAD OF THE INSTITUTION(Total of 2 interviews) | OBSERVATION (Total of 2 observations) | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Institution in Jordan | Duration of stay at the institution | Type of disability (-ies) | Duration of stay at the institution | Type of disability (-ies) | Two focus group discussions with caregivers at the institution | One interview with the director of the institution | One hour of general observation | |||
| Resident1 | 4 years | Moderate physical& mild intellectual impairments | Parent1 | 0.5 year | Moderate intellectual & sensory impairments | |||||
| Resident2 | 7 months | Moderate sensory& mild intellectual impairments | Parent2 | > 15 years | Severe physical impairments | |||||
| Resident3 | 1 year | Moderate intellectual impairment | ||||||||
| Resident 4 | 1.5 years | Moderate physical& mild intellectual impairments | Parent3 | > 10years | Mixed intellectual impairments | |||||
| Resident5 | 0.5 year | Mild intellectual impairment | ||||||||
| INTERVIEWS WITH RESIDENTS(Total of 10 interviews) | INTERVIEWS WITH PARENTS(Total of 6 interviews) | FOCUS GROUPS WITH CAREGIVERS(Total of 4 focus groups) | INTERVIEW WITH THEHEAD OF THE INSTITUTION(Total of 2 interviews) | OBSERVATION (Total of 2 observations) | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Institution in Lebanon | Duration of stay at the institution | Type of disability (-ies) | Duration of stay at the institution | Type of disability (-ies) | Two focus group discussions with caregivers at the institution | One interview with the director of the institution | One hour of general observation | |||
| Resident1 | 12 years | Mild intellectual impairment | Parent1 | 14 years | Moderate sensory impairment | |||||
| Resident2 | 9 years | Mild intellectual impairment | Parent2 | 6 years | Moderate physical impairment | |||||
| Resident3 | 14years | Mild sensory impairment | ||||||||
| Resident 4 | 6 years | Moderate physical impairment | Parent3 | 14 years | Severe intellectual disability | |||||
| Resident5 | 14years | Severe intellectual disability | ||||||||
Expert Group Meeting
Following the completion of the first draft of the study, the Social Development Division at the Economic and Social Commission for Western Asia (ESCWA) invited representatives of government ministries and national disability councils,[1] international experts, and civil society leaders to an Expert Group Meeting (EGM) to review the initial results and seek missing information or clarify discrepant data prior to the finalization of the report. The discussions and feedback provided at the EGM, as well as the additional information given to the research team following the meeting, have been incorporated into the report.
Limitations
Apart from the very limited number of institutions that could be interviewed for this study, it also faced a number of limitations that inhibit the generalization of its findings. First, resource and capacity constraints meant that only two in-depth case studies of residential institutions could be conducted, and these institutions may not be representative of institutions throughout the region. There is also potential bias in the selection of participants who were interviewed in the two case studies, as many were identified by the institution’s administrators. For example, interviewed parents may have been selected due to their good relations with the institution or active involvement in their children’s’ lives, which may or may not be characteristic of most parents. Moreover, residents with disabilities and their parents are dependent on the services of the institutions, thus they may have been reluctant to express criticism. Because the institutions in the two case studies primarily housed persons with physical, sensory, and intellectual disabilities, the research team had limited access to persons with psychosocial disabilities, who face unique challenges in residential institutions, particularly over-medicalization, and their experiences should be explored through further research.
In interviews with directors of institutions and public officials, the study did not explore all types of institutions that accommodate persons with disabilities, such as psychiatric institutions, prisons, or elderly homes. The limited number of institutions examined in this section also inhibits the generalization of findings. Finally, at times, data collected in interviews with public officials did not align with data from other sources, including information provided in the EGM.
[1] From Egypt, Jordan, Lebanon, Mauritania, Morocco, Oman, Palestine, Qatar, the Syrian Arab Republic, Tunisia, and Yemen.