Plain English Summary
Background and study aims
People with disability (PWD) amount to 15% of the world population and World Health Organization (WHO) estimates that 80% of them live in developing countries (World Health Organization, 2016; World Health Organization and the World Bank, 2011). In India, there are about 26.8 million persons with disability which is about 2.21% of its population (Government of India, 2011). Evidence suggests that PWDs are more likely to experience adverse socioeconomic outcomes such as less education, poorer health outcomes, lower education achievements, less employment and higher rates of poverty than persons without disability (Government of India, 2011; World Bank, 2009; World Health Organization and the World Bank, 2011). Additionally, People with disability face barriers accessing health and rehabilitation services (World Health Organization, 2018).
This study aims at understanding the potential of Disabled People’s Networks in promoting disability inclusive development in Uttarakhand state, North India.
Who can participate?
Using a lottery system, we randomly allocated 20 villages to the intervention arm and 19 to the control arm. Based on an adapted Key Informant methodology, we identified all people with disability who were not currently involved in a disabled people’s organisation to participate. The minimum age for participation was 15.
What does the study involve?
In the intervention clusters, local non-government organisations (NGOs) facilitated the formation of Disabled People’s Organisations (DPO) and motivated study participants to be involved in the activities of the DPOs. A curriculum and training program was also developed. Five NGOs, each within one of the intervention sites were selected to assist in the intervention study, involving support in DPO formation.
In the non-intervention clusters, no DPOs were facilitated but the ongoing disability work continued. The control group only received referrals for disabilities detected by RAD screening, but no additional assistance. They will receive the interventions at the end of this study.
Possible benefits and risks of participating
Disabled People’s Organisations could promote wellbeing, participation, and rights of people with a disability. DPOs also empowered people with a disability to actively express their priorities and needs.
Location of study centre
The study took place in 39 villages purposively selected from five distinct areas located in New Tehri and Dehradun districts of Uttarakhand.
Source of funding
The study was funded by Christian Blind Mission India.
Main contact
Dr Nathan Grills
ngrills@unimelb.edu.au
Trial website
Contact information
Type
Public
Primary contact
Dr Nathan Grills
ORCID ID
http://orcid.org/0000-0003-1228-3047
Contact details
Associate Prof and Public Health Physician
Nossal Institute for Global Health
University of Melbourne
333 Exhibition Street
Melbourne
3004
Australia
+61 3 8344 4299
ngrills@unimelb.edu.au
Additional identifiers
EudraCT number
Nil known
ClinicalTrials.gov number
Nil known
Protocol/serial number
IIPHH/TRCIEC/10/2014
Study information
Scientific title
A randomised controlled trial to assess the impact of DPO formation using the RAD and other evaluation tools
Acronym
NIDPO
Study hypothesis
Activities and services facilitated by Disabled People's Network (DPN) improve PWD's (people with a disability) well-being, community participation and access to services
Ethics approval
1. Approved 28/01/2015, Community Health Global Network, Uttarakhand Cluster (CHGN Uttarakhand Cluster, Disability Advisory Committee, India; +91 (0) 1360-253323; robert@eha-health.org), ref: n/a
2. Approved 26/06/2015, Indian Institute of Public Health – Hyderabad (ANV Arcade, Plot No.1, Amar Cooperative Society, Kavuri Hills, Madhapur, Hyderabad - 500081, A.P., INDIA; +91 40 49006003; murthy.gvs@iiphh.org), ref: IIPHH/TRCIEC/10/2014-1
Study design
Cluster randomized interventional trial
Primary study design
Interventional
Secondary study design
Cluster randomised trial
Trial setting
Community
Trial type
Quality of life
Patient information sheet
Not available in web format, please contact Dr Nathan Grills (ngrills@unimelb.edu.au) for a PIS.
Condition
Disability
Intervention
A cluster randomized interventional trial in the Dehradun district of Uttarakhand state in North India to evaluate the impact of DPOs (Disabled People's Organisations) on inclusion, wellbeing and participation.
Intervention arm: Participants in the intervention group would receive services faciliated by Disabled People's Networks. DPNs is a participatory model and participants were encouraged to ultimately determine the activities they undertake.
Uttarakhand Cluster of NGOs and Public Health Foundation of India would provide training in community mobilisation, advocacy of rights to health and education, bookkeeping, awareness-raising and access to government programs.
Local NGOs facilitated the DPO formation by regular home visits to individual families to motivate them to be involved in the activities of the DPOs. A curriculum and training program were also developed. Five NGOs were selected to assist in the intervention study, involving support in DPO formation.
The DPOs were encouraged to conduct regular disability group meetings to facilitate problem solving, advocacy and planning. As a part of the DPOs, persons with disabilities were encouraged to visit the block and district office and make at least three visits to the disability commissioner.
Control arm: For participants in the control group, current disability work would continue but no DPNs would be facilitated.
Intervention type
Behavioural
Phase
Drug names
Primary outcome measure
Well-being, community participation, and access to services assessed at baseline and endline (after DPN implementation) using the rapid assessment of disability (RAD) tool
Secondary outcome measures
none
Overall trial start date
01/01/2015
Overall trial end date
31/05/2017
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
1. Have a disability
2. Currently living in the selected villages
3. Aged >= 15 yrs
4. Not currently involved in a disabled people’s organisation
Participant type
Other
Age group
Adult
Gender
Both
Target number of participants
500
Total final enrolment
527
Participant exclusion criteria
1. Guardian unwilling or unable to give consent
Recruitment start date
01/04/2015
Recruitment end date
30/04/2017
Locations
Countries of recruitment
British Indian Ocean Territory, India
Trial participating centre
India
Community Health Global Network
KHW, Rajpur Rd
Rajpur
Dehradun
248139
India
Sponsor information
Organisation
Nossal Institute for Global Health
Sponsor details
University of Melbourne
333 Exhibition Street
Melbourne
3004
Australia
+61 3 8344 4299
ngrills@unimelb.edu.au
Sponsor type
University/education
Website
https://mspgh.unimelb.edu.au/centres-institutes/nossal-institute-for-global-health
Funders
Funder type
Charity
Funder name
CBM India
Alternative name(s)
Funding Body Type
Funding Body Subtype
Location
Results and Publications
Publication and dissemination plan
Target journal for publication: BMC Public Health.
IPD sharing statement:
All data generated or analysed during this study will be included in the subsequent results publication
Intention to publish date
30/11/2019
Participant level data
Available on request
Basic results (scientific)
Publication list
2020 results in https://www.ncbi.nlm.nih.gov/pubmed/32005206 (added 03/02/2020)