An interventional study on the effects of a disabled people’s network in promoting well-being and participation of People with Disability (PWD) in Uttarakhand, North India

ISRCTN	ISRCTN36867362
DOI	https://doi.org/10.1186/ISRCTN36867362
Secondary identifying numbers	IIPHH/TRCIEC/10/2014

Submission date: 03/10/2019
Registration date: 08/10/2019
Last edited: 03/02/2020

Recruitment status: No longer recruiting
Overall study status: Completed
Condition category: Musculoskeletal Diseases

Prospectively registered

Protocol

Statistical analysis plan

Results

Individual participant data

Plain English summary of protocol

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

Contact information

Dr Nathan Grills
Public

Associate Prof and Public Health Physician
Nossal Institute for Global Health
University of Melbourne
333 Exhibition Street
Melbourne
3004
Australia

ORCID ID	0000-0003-1228-3047
Phone	+61 3 8344 4299
Email	ngrills@unimelb.edu.au

Study information

Study design	Cluster randomized interventional trial
Primary study design	Interventional
Secondary study design	Cluster randomised trial
Study setting(s)	Community
Study type	Quality of life
Participant information sheet	Not available in web format, please contact Dr Nathan Grills (ngrills@unimelb.edu.au) for a PIS.
Scientific title	A randomised controlled trial to assess the impact of DPO formation using the RAD and other evaluation tools
Study acronym	NIDPO
Study objectives	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(s)	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
Health condition(s) or problem(s) studied	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
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 study start date	01/01/2015
Completion date	31/05/2017

Eligibility

Participant type(s)	Other
Age group	Adult
Sex	Both
Target number of participants	500
Total final enrolment	527
Key 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
Key exclusion criteria	1. Guardian unwilling or unable to give consent
Date of first enrolment	01/04/2015
Date of final enrolment	30/04/2017

Locations

Countries of recruitment

British Indian Ocean Territory
India

Study participating centre

India

Community Health Global Network
KHW, Rajpur Rd
Rajpur
Dehradun
248139
India

Sponsor information

Nossal Institute for Global Health
University/education

University of Melbourne
333 Exhibition Street
Melbourne
3004
Australia

Phone	+61 3 8344 4299
Email	ngrills@unimelb.edu.au
Website	https://mspgh.unimelb.edu.au/centres-institutes/nossal-institute-for-global-health
"ROR"	https://ror.org/01ej9dk98

Funders

Funder type

Charity

CBM India

No information available

Results and Publications

Intention to publish date	30/11/2019
Individual participant data (IPD) Intention to share	Yes
IPD sharing plan summary	Available on request
Publication and dissemination plan	Target journal for publication: BMC Public Health.
IPD sharing plan	All data generated or analysed during this study will be included in the subsequent results publication

Study outputs

Output type	Details	Date created	Date added	Peer reviewed?	Patient-facing?
Results article	results	31/01/2020	03/02/2020	Yes	No

Editorial Notes

03/02/2020: Publication reference added.
08/10/2019: Trial’s existence confirmed by Community Health Global Network, Uttarakhand Cluster.