Fostering inclusion through evidence and empowerment
Research // Social
Social
The areas of social research at AIDD are:
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Social research or social science research is investigation into human behavior by social scientists or other researchers of related disciplines. Here at AIDD social research with a focus on disability issues is conducted through systematic plans with research methodologies that can be quantitative or qualitative or methodology that constitutes of elements of both. Quantitative methodologies make use of quantifiable evidence for investigating disability and social phenomenon. Major reliance is on statistical analysis of large numbers of cases through use of computerized systems. Qualitative methodologies on the other hand utilize direct observation, communication with participants, and analysis of texts for a greater understanding of disability and social phenomenon. The modern methods of social research with a focus on a disability research at AIDD involves incorporation of elements from quantitative as well as qualitative methodologies for following a well-structured approach.
Experts and potential researchers from social science and humanities disciplines such as economics, political science, demography, sociology, anthropology, psychology, education as well as jurisprudence have prospects for conducting research with AIDD.
Quality of Life (QoL) and Health Related Quality of Life (HRQoL)
In the general sense, quality of life (QoL) is a broad and multidimensional concept constituting of evaluations on positive and negative aspects of life as a measure of life satisfaction, it encompasses various areas such as physical health, family, education, employment, wealth, culture, spirituality, and other domains. As opposed to standards of living which is concerned with quantifiable matters (e.g. income, employment, life expectancy, incidence of disease, etc.), quality of life is more subjective in nature and includes intangible concepts as well. The focus at AIDD is on a related and relatively more recent concept, health related quality of life (HRQoL).
Health Related Quality of Life (HRQoL) assessment is an evaluation of
QoL and its relationship with health, it is the perceived quality of people’s
daily lives and the assessment encompasses aspects of the general or overall
quality of life (QoL) that effect physical as well as mental health. At AIDD,
HRQOL assessment serves to study how the individual’s well-being is affected
over time by disability and for evaluation of program interventions. The focus at
AIDD is not restricted to the people with disabilities, but also on individuals
around them such as their caregivers and members of their household. HRQoL
consists of perceptions about physical and mental health along with their
correlates such as health risks and conditions, functional status, social support,
and socioeconomic status at the individual level. On the community level, HRQoL consists of community resources conditions, policies and practices which have a tendency to shape the health perceptions and functional status of the people.
HRQoL assessment is now a fundamental component of public health surveillance and research at AIDD with the concept serving to deliver valid indicators of intervention outcomes and requirements. Surveillance data from HRQoL investigations can be used for identification purposes as well as assist in guiding interventions aiming for improvements and prevention of health issues. The respective needs of health policies and legislation, resource allocation, development of strategic plans, and monitoring and evaluation of interventions can be met with interpretation and publication of HRQoL data. They will also aid in motoring progress of health objectives, and traditional public health measures may be supplemented by HRQoL assessment.
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Health related quality of life, including psychological and sexual wellbeing, of adolescents with cerebral palsy in rural Bangladesh and stress among their primary caregivers: Bangladesh CPQoL study
Community Participation
Community-based participatory research (CBPR), a collaborative approach, is adopted by AIDD for equitable involvement of all, including community members, representatives of local organizations, researchers, and others in the entire research process. Community-based participatory research (CBPR) involves contribution of expertise of all partners with due acknowledgement and participation in decision making. CBPR intends to integrate and expand the gleaned knowledge and understanding of phenomenon.
At AIDD research participants are often recruited using the Key Informant Method (KIM). KIM is a novel method for identifying children with disabilities in the community. It involves training local volunteers to act as key informants (KI’s). KI’s are people who live and/or work in their local community, who have a social role through their vocation, and who are, therefore, likely to know the local context as well as the people about whom information is being sought. Major partner CSF Global has already trained over 25,000 KI’s nationally. The network of KI’s and other existing infrastructure will be used for investigations using Community-based participatory research (CBPR). Initial contact with research participants is made through the local KI’s and health professionals.
Successful implementation of CBPR partnerships creates numerous benefits for all involved partners. It allows participating institutions to learn more about local services and resources, and importantly facilitates a greater understanding of community dynamics, culture, and history, and that interventions in other communities may not be applicable on local communities. From the perspective of the community, the method gives them a path for voicing their concern in the form of data to the policymakers, the media, and high-level decision makers in various levels of government structures. It will also allow them to help shape and see the resulting benefits in the community.
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Social Capital
Social capital consists of a set of social structures, and relationships and social ties with individuals and organizations for expansion of choice-making options and opportunities leading to an enriched and superior quality of life (QoL). Social capital is centered on social networks and is economic and cultural in nature. The relationships and social structures build on trust and cooperation and the norms of reciprocity. These in turn are driven by values in the community.
In the context of AIDD research, social capital is the individual and collective power of people with disabilities and their families, communities and organizations, for greater inclusiveness within the family, community, education, employment and other spheres. Social capital is expected to increase quality of life and increase access to social services and support. Social capital might be viewed as existing at individual level, or it might also be considered as a community attribute. To promote inclusiveness at schools and the community and development of social capital; school teachers and key influencers in the community are motivated, trained, mobilized and organized to sensitize them towards the needs of people with disabilities and their families or households, and for building a network centered around trust and cooperation.
Further opportunities exist for innovative research on development and mobilization of social capital of individuals with disabilities and their family/household members, and exploration of the networks and relationships existing in the community.
Social Justice and Advocacy
Social justice refers to fair and just relation between the society and individuals. It is multidimensional and measurable through distribution of wealth, opportunities for personal activities, and social privileges. Social justice is considered to be economic justice alongside other aspects. The present areas of focus at the grassroots level are removal of obstacles to social mobility and the creation of safety nets against shocks and stresses.
Here at AIDD, research is conducted on social equality, human rights of people with disabilities, and advocating justice for persons with disabilities. Our efforts for ensuring social justice include working with the community to sensitize them towards the needs of children with disabilities, raise awareness about rights, duties and responsibilities, forming networks and groups to assist in advocacy in the future.
Individuals from relevant disciplines having suitable qualifications and/or experience who are eager to work on disability issues have the scope to be involved with AIDD in the areas of social justice and advocacy.
Please visit our page on community-based rehabilitation to find out more
Awareness
AIDD carries out extensive awareness raising programs for promotion of holistic disability-inclusive development. This includes community mobilization activities, workshops, public lectures, seminars, roundtable discussions and conferences are conducted with development partners such as local, national, regional, and international NGOs, community groups, local and central government structures, donors, and media. Other awareness raising campaigns include rallies, graduation ceremonies of children with disabilities from the rehabilitation centres, and photo exhibitions among other events. World Cerebral Palsy Day is observed through events such as day-long cultural programs involving children with disabilities and their families, photo exhibition at the capital city of Dhaka. The lives of children with Cerebral Palsy (CP) and their families, the effects of the interventions, and other matters are presented for high-impact awareness raising so that new networks and relationships with potential stakeholders as well as the general public might be developed.
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The Bangladesh Cerebral Palsy Register (BCPR) project is the recipient of World Cerebral Palsy Day Awards 2017 in Medical/Therapeutic category
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World Cerebral Palsy Day 2017 was observed in collaboration with key partners in the form of a photo exhibition at Drik Gallery, a prominent and popular art and photography gallery in Dhaka, Bangladesh. Over 40 portraits were displayed for three days alongside locally produced assistive devices. The exhibition witnessed hundreds of visitors and significant contributions were received primarily as purchase of portraits and sponsoring of assistive devices, and drew significant media attention. The event has increased awareness of cerebral palsy in Bangladesh – it is hoped this momentum shall help to facilitate and continue support of children with disabilities including cerebral palsy.
These programs serve the purpose of not only raising awareness on disability with issues, but also to present our findings and share the learning experiences with relevant parties such as planners and policy-makers, and for creation of a base from which advocacy may be initiated.
