Photo by AMISOM via Iwaria

Photo by AMISOM via Iwaria

Using an innovative family-centered evidence toolkit to improve the livelihood of people with disabilities in Bamenda (Cameroon): a mixed-method study by Yuh et al

PWDs represent one of the largest minority groups in the world, estimated to be over 15% of the world’s population, often left out in development processes and progress (26). A substantial portion of the global disability population comprises children, residing in LMICs. However, there exist significant gaps in research data related to disability in the Global South, in terms of the challenges faced by PWDs in these regions, including both structural and perceived barriers and obstacles. This data gap warrants more comprehensive research efforts, to tackle north–south disparities, by capturing local unique experiences and realities, instead of over-relying on concepts, theories, and practices borrowed from studies conducted in the Global North. To overcome the epistemological and methodological vulnerabilities that afflict most of the disability-related investigations carried out in LMICs, the present study was undertaken to provide data on the current wellbeing and challenges faced by children and adults with disabilities in the Global South (Bamenda, Cameroon). Our qualitative findings suggest that PWDs are still stigmatized and marginalized, facing exclusion and experiencing disparities. These findings are well in line with some studies conducted by the United Nations, which show that great misconceptions still exist about PWDs (10). These misconceptions hinder the design and implementation of inclusive development programs. Counseling and early sensitization of families including parents and service providers in the dissemination and translation of knowledge and rehabilitative care are anticipated to set the trend for a positive change based on the best available evidence.

Through the intervention of household visits by community health workers, this study has aimed to address this gap by providing counseling and guidance in order to improve the livelihoods of PWDs using innovation and best practices embedded into an evidence toolkit that we call EFCETD. These practices were adopted in conformity with past interventions administered by the WHO (20) aimed at enhancing the quality of life of PWD. According to White (23), a specific intervention cannot be assumed to work effectively if rigorous evaluation is not carried out, since only evidence can drive and inform development. In our study, comparing the different scores over the period revealed a relevant change from the baseline to the last visit. This change was greatly due to counseling provided by community health workers during household visits, which proved to be impactful in creating and supporting sustainable lifestyle improvement.

The following findings can have practical implications, highlighting some key orientations and aspects for policymakers, governments, and funders:

  1. Getting research into households: Despite the hype within the evidence revolution trends for getting research evidence into policy and practice, little attention has been paid to getting research evidence to consumers, who paradoxically are the final unit of evidence implementation. It is important for policymakers and researchers to consider directing more attention to innovative approaches for getting research into households/citizens.
  2. The identification of PWD: In LMICs, in particular, identifying PWDs is still an issue. Most PWDs do not have any forms of identification. This issue precludes PWDs from benefiting from evidence-based policies aimed at improving their quality of life and increasing the equity gap. Personal identification of PWDs will allow them to gain access to basic services, participate in governance, and create bank accounts for personal expenses and/or businesses, which will all lead to them having a good life. This fact is aptly put in the words of a study participant:

    “Providing me with a disability card has enabled me to have my own identity, now I can have a bank account, access free services made available by the government, and live a good life.”
    Young female with a disability (Bamenda, Cameroon).

    “Using evidence-based guidelines as recommended by this pilot study will increase the identification of PWDs and increase their access to basic services.”
    Regional Chief of PWDs, Ministry of Social Affairs, (Bamenda, Cameroon).
  3. Improving livelihoods through innovation and best practices: Using and integrating innovative approaches and best practices into households will improve livelihoods for PWDs, thereby reducing the equity gap. These best practices can range from inheritance for PWDs, access to financial institutions (including the digital economy), and inclusive governance, especially at decentralized levels.
  4. Inclusive data collection and use for decision-making: While this innovative approach pushes relevant evidence into households, it also ensures that data from households reach decision-makers in health, education, empowerment, livelihoods, and social affairs departments. These real-time citizen science data can enable the inclusion of people with disability (and other target groups) into the data for the decision-making process. This will be a game changer for inclusive research and development if the effectiveness of innovation can be evaluated within a bigger study.
  5. Community health workers can play a vital role that has been largely unexploited. Their household visits could potentially improve access to basic services for children with disabilities beyond just health. In this study, we see them supporting education, empowerment, social wellbeing, and livelihoods. This integrated approach makes them suitable for supporting people with disabilities.
  6. This approach marks an innovative step to decolonizing aid for people with disabilities, especially in humanitarian settings. It is a context-relevant approach designed by experts and researchers including people with disabilities in this setting and using indigenous approaches that take into consideration the barriers and facilitators of the context—including conflict, disease, and fragility.
  7. Using implementation science approaches will add value to existing policy and practice strategies and engage the public (citizens, households, and communities) in implementing evidence-based approaches and making evidence-informed choices for rights, needs, and basic services for people with disabilities. This will also help bridge the gap between research evidence and people with disabilities while adding a piece of the puzzle for evidence implementation for policies, practices, and the public.

Provided with more funding and global testing of this intervention in other parts of Cameroon and Africa at large, this approach will provide a robust evaluation of the intervention. In line with White’s opinion that evidence is the best buy in development, this study provides evidence of the presumptive idea that children and persons living with disabilities in Bamenda face many endeavors and are financially limited. Based on the global agenda of “Leave No-One Behind: Tackling Inequalities of Persons with Disabilities in the 2030 Agenda for Sustainable Development,” empowering children and persons with disabilities will bring forth an inclusive development goal. PWDs are more likely to experience adverse socioeconomic outcomes, such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates. As COVID-19 continues to have wide-reaching impacts globally, it is important to note how PWDs are uniquely impacted by the pandemic, including health, education, and transport considerations. Meanwhile providing medical assistance, educating them, and showing them love are protective factors to improve their wellbeing and livelihood. Unfortunately, most of these needs are neither being met by the government nor by the community. It is very important to pay attention to these persons for an inclusive development dominated by better standards of living. Knowledge brokering is very important for persons with disabilities in order to make informed choices and lend their voices to action plans and development programs without leaving anyone behind. Without voices and inclusive programs for persons with disabilities for inclusive development through innovation and best practices, development agencies and evidence to policymakers translators will fall short of bridging the gap of policy to practice gap. The statistical results from our intervention indicated a statistically significant impact of the intervention, which became stable after 4 months and was preserved until 12 months.

Research Study by Nain et al