Consultancy

Baseline Survey on Persons with Autism Spectrum Disorders (ASDs) in the Kingdom of Eswatini

30 July 2019

Eswatini

Background

The Government of Eswatini through the Department of Gender and family issues and the Department of Social Welfare under the Deputy Prime Ministers office in partnership with UNFPA Eswatini and Autism Swaziland as part of the 6th country programme implementation and with joint support from UNDP and UNICEF, plans to conduct a baseline survey on persons with Autism Spectrum Disorders (ASDs) in the Kingdom Eswatini.

The early diagnosis, appropriate research and effective interventions are vital to the growth and development of people with ASD. Early intervention is crucial for addressing their needs, thus improving their opportunities to live a quality life with the ability to participate in the greater community and increasing the likelihood that they will need lower levels of support later in life. A cure for ASDs is not available. Evidence-Based psychosocial interventions, however, such as behavioral treatment and skills training programmes for parents and other caregivers, can reduce difficulties in communication and social behavior, with a positive impact on the person’s well-being and quality of life.

According to WHO, available scientific evidence suggests that there are probably many factors that make a child more likely to have an ASD, including environmental and genetic factors. However, epidemiological data is conclusive that there is no evidence of causal association between measles, mumps, rubella or any other children vaccine, and ASD.

People with ASDs, as well as other disabilities, are significantly more vulnerable to the risk of HIV infection. A lack of education, of awareness of their rights, and of the possibility of seeking protection (due to social stigma, isolation and lack of access to communications, information and services) makes them more susceptible to deceit, while making it easier for those who abuse them to go unpunished. Communication barriers, affecting people with developmental disabilities, make it difficult to ask for and receive help, to make themselves understood or to be even taken seriously, in addition to professionals (law-enforcement and medical staff) seldom being adequately trained to deal with such individuals.

Purpose

The baseline survey is intended to obtain reliable and relevant data on the prevalence of ASDs in the selected district, their access to basic services and prevalence of violence against people with ASDs. The information obtained from the study will be used to inform programmatic interventions focused on ASDs and protection of their human rights. This will further enhance capacities of Government institutions to identify, diagnose and treat people with ASDs; Improve information related to ASDs and challenges faced by these individuals; and promote active advocacy and monitoring on issues related to people with ASDs. 

Specific Objectives

Prevalence of ASDs in Eswatini

  • Identify the number of people with ASDs disaggregated by sex and age 
  • Identify the number of people with ASDs exposed to or infected by HIV 
  • Determine where possible the number of people with ASDs in contact with services

Prevalence of Violence Perpetrated against People with ASDs

  • Identify the prevalence of violence (physical, psychological and sexual) perpetrated against people with ASDs disaggregated by sex and age and by types of violence
  • Identify the needs that arise as a result of the aforementioned forms of violence experienced by people with ASDs
  • Identify frequency, nature and drivers of sexual violence perpetrated against women and girls with ASDs
  • Identify perpetrators of violence 
  • Identify existing preventative mechanisms established to prevent violence against people with ASDs
  • Access to Basic Services
  • Identify the access to basic services of people with ASDs 
  • Identify gaps in services and unmet needs of people with ASDs
  • Identify their access to education and employment
  • Identify availability of health services for people with ASDs
  • Evaluate the referral networks, linkages and services for people with ASDs
  • Assess the current state of ASD detection, diagnosis and treatment in Eswatini
  • Assess the access to justice of people with ASDs
  • Identify existing supportive services available to people with ASDs 
  • Identify unmet needs of caregivers of people with ASDs
  • Assess the level of ASD competency among the health personnel
  • Assess availability of supporting groups for families with people with ASDs 
  • Assess the level of awareness of medical professions, police, court officers, and traditional leaders on ASDs

Survey Design and methodology 

The baseline survey will gather information using a combination of quantitative and qualitative data collection methods and tools. Four techniques will be used to collect data, namely the desk review, questionnaires, interviews with key informants and focus group discussions. Wide range of sites, including communities, Government officials and partners will be interviewed. 

The consultant selected to undertake the assignment will present a detailed inception report indicating how it will undertake the baseline survey before the actual data collection process. The inception report, among other things, will cover the sampling framework for the different data collection sources, data collection methodologies and specific tools to be used. It will also envisage the model of site selection, including covering both rural and urban areas that will be randomly selected and included in the study. The inception will also provide a geographical map of data collection. 

Following the submission of the inception report, the consultant/company in coordination with Autism Eswatini will prepare the questionnaires to be used during the individual interviews and group discussions. 

The team of data collectors selected by Autism Eswatini will be trained by the consultant/company to ensure that the data collected is carefully managed (handled, transported and stored) throughout the study period. 

Furthermore, careful and detailed records of all interviews will be maintained for each community surveyed. The training of data collectors by the consultant/company before sending them to the field will ensure that good quality data is obtained. The data collection instruments will meet international standards. The training will also ensure that team members, researchers and data collectors are aware of the key areas to be covered including their sensitive nature. Role playing will provide further assurance that high quality will be maintained. 

All interviews, with appropriate consent, will be recorded. The data collectors will take notes during the group discussions and individual interviews carried out with respondents. The number of teams for each community/district will be identified by the consultant/company and included in the inception report. Each data collection team will be comprised of a supervisor and data collectors. The team supervisor will be directly reporting to the consultant/company and getting guidance on the data collection issues as well as soliciting guidance from Autism Eswatini on the issues related to ASDs. 

The baseline study proposal will be submitted for review and approval at the Ethics Committee of Eswatini for approval. All members of the research team and data collectors will be provided guidance in research ethics to meet the highest ethical standards of data collection and analysis throughout the study. A process of obtaining informed consent will be put in place using the standard information sheets and consent forms provided by the Ethics Committee of Eswatini. In addition, permission to conduct the survey will be obtained from the relevant Government institutions. Given the sensitive nature of the survey, efforts will be made to ensure that respondents are fully aware of the risks and benefits of participating and that the confidentiality and anonymity will be maintained. 

Duration and Scope of Assignment

The baseline survey is expected to be completed within a total of three months’ duration. The inception report to be submitted by the consultant/company to be considered for the assignment should consist of a detailed work plan, including major tasks, deliverables and time frame. The survey will be undertaken in the Lubombo region and will cover both rural and urban areas. 

Expected Deliverables

  • The consultant/company will submit the following: 
  • Inception report containing a detailed work plan for the entire duration of the consultancy
  • Weekly progress reports (verbal) should be made by the consultant/company to the UNFPA Eswatini CO 
  • Data collection methodology and tools utilized for collecting information in the field
  • Complete list of sampled districts/areas with accompanying maps
  • Draft report with inputs from all stakeholders, including UN agencies and the DPM’s office (not exceeding 50 pages)
  • All working files and final dataset including the raw data gathered during the research from different sources
  • Final Baseline Survey report

Required Expertise and qualifications 

  • The consultant/company to be considered for the assignment is expected to have the following experience and qualifications:
  • Postgraduate degree in public health, statistics, epidemiology, applied research and related technical fields
  • Minimum seven years of experience in quantitative and qualitative methods and/or monitoring and evaluation
  • Demonstrated experience in:
  • organizing and undertaking both quantitative and qualitative data collection
  • performing data analysis and management. Demonstrated ability to transform large amounts of data into theory by reducing the volume of raw information and creating a conceptual framework
  • using statistical software for quantitative analysis
  • knowledge of areas: Autism Spectrum Disorders, developmental disabilities, disabilities and HIV, sexual and reproductive health and disabilities, violence against persons with disabilities is a strong asset
  • Excellent command of spoken and written English.

See attached detailed TORs

The interested candidates are requested to submit a brief expression of interest, curriculum vitae and certified copies of certificates, through email to:  

Ms. Sally Mlotsa, PA / Human Resources Associate,

4th Floor UN House, Corner Somhlolo Rd, Madlenya Street, Mbabane,

Email: mlotsa@unfpa.org