Family quality of life for families of children with disabilities in African contexts: a scoping review.

BACKGROUND: Family Quality of Life (FQOL) is an important outcome for families of children with disabilities and is influenced by context and culture. Minimal research explores FQOL in African contexts. PURPOSE: This scoping review identifies factors contributing to FQOL for families of children with disabilities in African contexts. METHOD: We were guided by Arksey and O'Malley's scoping review framework, searching for research papers from the following electronic databases: CINAHL, Embase, Medline, Global Health, and PsycINFO. Using pre-determined eligibility criteria, two authors independently reviewed articles for inclusion via Covidence, a reference manager that facilitates blind reviewing. Two other authors independently extracted data from studies using a data-charting form based on Zuna and colleagues' FQOL framework. Reviewers met regularly for discussion to reach consensus. RESULTS: Fifty-three articles met the inclusion criteria, and findings demonstrated a broad variety of factors contributing to FQOL within the FQOL framework related to family unit factors, individual member factors, and external support factors. We found that poverty, stigma, and spirituality were particularly prominent factors affecting FQOL negatively and positively in African contexts. CONCLUSION: Whilst there are universal factors that contribute to FQOL, recognising the influence of context-specific factors (i.e. poverty, stigma, spirituality) is important in order to provide effective, culturally relevant support that enhances FQOL for families of children with disabilities in African contexts.

Needs of families of children with cerebral palsy in Bangladesh: A qualitative study.

PURPOSE: Families of children with disabilities often have needs related to the care of their child with a disability. Although there has been extensive exploration of family needs in high-income contexts, there is little known about this issue in low and middle-income countries like Bangladesh. In this study, we explored the needs of families of children with cerebral palsy in Bangladesh. Such understanding is important as it will help to improve services for children with disabilities and their families. METHODS: We used a qualitative approach and interviewed 20 family members of children with cerebral palsy who visited the Centre for the Rehabilitation of the Paralysed, Bangladesh. We thematically analyzed data from semistructured interviews. RESULTS: Five different themes were found on needs of families with children with disabilities: (a) financial needs, (b) needs for disability-related services, (c) needs for family and community cohesion, (d) informational needs, and (e) emotional needs. Participants overwhelmingly reported that financial needs were their highest priority. CONCLUSION: Needs of families of children with disabilities must be considered in rehabilitation services to improve children's outcomes. Further studies are required to explore needs of families of children with disabilities who do not have access to rehabilitation services.

Community-based rehabilitation/community based inclusive development functioning during the COVID-19 pandemic: A secondary analysis of qualitative data.

INTRODUCTION: The coronavirus (COVID-19) became a global pandemic in March 2020 and impacted nations worldwide not only because of the disease but also because the containment measures-imposed created ripple effects for the populations in each country. The COVID-19 pandemic disproportionately affected vulnerable groups, such as persons with disabilities. This study aimed to understand the impact of COVID-19 on the function of Community-Based Rehabilitation (CBR)/Community-Based Inclusive Development (CBID) across nations and for their target communities-persons with disabilities. The current article also described some measures CBR/CBID programs took in light of service closure to facilitate access to needed services for persons with disabilities. METHODS: We conducted a secondary analysis of qualitative data to understand the impact of COVID-19 on the functioning of CBR/CBID programs and their target communities. The original qualitative data were collected through online dialogues among CBR/CBID partners across five regions of the world, facilitated for understanding of their practices on five other topics. FINDINGS: COVID-19 significantly impacted the function of CBR/CBID programs across the world. Many services were halted due to public health measures, such as maintaining social distancing or lockdowns. The COVID-19 pandemic also had a negative impact on access to health, education and livelihood support for persons with disabilities. Additionally, many people with disabilities did not have access to COVID-19 related information and services like vaccines. However, we found that technology played a significant role in revitalizing CBR/CBID programs during COVID-19. CBR/CBID service providers across five regions used online platforms to disseminate information about COVID-19. Professionals also used technology to provide rehabilitation and educational services to people with disabilities through online platforms. CONCLUSION: Our findings suggest that technology can play a vital role in continuing many services (e.g., CBR/CBID) that cannot be offered in person during crises like COVID-19. However, it is important to remember that technology may not be accessible to many individuals with disabilities, specifically those who reside in rural areas and who experience adverse situations like financial constraints. Additionally, many persons with disabilities may not have the necessary knowledge and skills to use technology. CBR personnel must consider that before adopting technology to provide services under CBR programs.

Users' satisfaction and experiences in using assistive devices distributed by a rehabilitation centre in Bangladesh: a cross-sectional study.

PURPOSE: This study aimed to understand Bangladeshi users' satisfaction with their assistive devices, including (a) device characteristics, e.g., size, weight, safety, ease of use, comfort, and effectiveness, and (b) availability of parts and repair services. We also described how frequently individuals with disabilities living in the community used assistive devices in their daily activities and how the use of assistive devices promoted individuals' wellbeing. METHOD: We conducted a cross-sectional survey with assistive device users or their guardians (if under 18) in Bangladesh about their experience and satisfaction with their assistive device 6 months after receiving it. The research team developed a survey questionnaire consisting of both closed and open-ended questions. All data were collected via telephone interviews. We employed descriptive statistics to analyse quantitative data and inductive analysis for the qualitative data. RESULTS: We found that out of the 376 participants, nearly 95% used assistive devices on a regular basis, and their satisfaction with the devices was high. Participants reported that assistive devices improved mobility, independence, and wellbeing of persons with disabilities. A few participants (6.4%) reported that their devices were damaged. Some participants identified concerns with their assistive devices, including (i) inappropriate size of ankle-foot orthoses, manual self-propelled wheelchairs, and prostheses, (ii) back slabs (a type of brace) being too short, and (iii) walking frames being too large. Several participants noted pain and discomfort when they used their assistive device. Additionally, some participants stated that environmental factors (e.g., muddy roads) contributed to the disrepair of their assistive devices. Finally, participants recounted that repair services were limited in rural areas of Bangladesh. CONCLUSION: These findings indicate that the provision of assistive devices requires accommodating individuals' needs and ensuring appropriate environments in which to function. The results support the need for follow-up services after distributing assistive devices. Further research could explore the impact of assistive devices on the family quality of life of persons with disabilities.IMPLICATIONS FOR REHABILITATIONIt is essential for rehabilitation professionals to conduct follow-up services after distributing assistive devices among persons with disabilities.There is a need for the government of Bangladesh to revisit the Rights and Protection of Persons with Disability Act of 2013 and provide further clarity about their commitment to the provision of assistive devices and associated services (e.g., repair services) and its subsequent implementation.Policymakers in Bangladesh must be proactive to translate policy commitments into practice, as it relates to building an accessible environment for people using assistive devices. Further, government efforts are needed to educate policy implementers in all relevant ministries so that all responsible bodies are fully familiar with their national and international commitments regarding the rights of persons with disabilities.Future research could (i) include user's satisfaction with the service delivery process and (ii) measure the impact of assistive devices on family quality of life of persons with disabilities.

Experience of families in accessing government-led support for children with disabilities in Bangladesh.

PURPOSE: The purpose of the study was to understand the experiences of families in accessing government support (i.e., disability allowances and rehabilitation services) for their children with disabilities (CWDs) in Bangladesh. METHOD: We employed a qualitative descriptive method of study and interviewed 27 family members of CWDs. A thematic analysis was applied to analyze data using the following access dimensions to organize themes: availability, accommodation, accessibility, affordability, acceptability, and awareness. RESULTS: Participants shared both positive and negative experiences across the access dimensions in accessing government support. Participants appreciated the government's effort in providing support to CWDs. In particular, disability allowances and coordinated rehabilitation services at one-stop were important for families. Further, positive attitudes, such as respect and support from providers, were reported by many families. However, a majority of participants reported a long wait time to get the disability allowance for CWDs. Participants also reported that a shortage of rehabilitation professionals in the public sector was a major concern. Finally, inaccessible infrastructure (e.g., facilities and transportation) and stigma were barriers for many participants of the study. CONCLUSION: The results suggest that the government's commitment "on paper" is yet to meet the needs of its intended beneficiaries "in practice". There is a need for policy intervention to address barriers faced by families within the context of current access pathways.Implications for rehabilitationShortage of rehabilitation services and limited availability of disability allowances [negatively] affect family member's access to government-led support for their CWDs in Bangladesh.The government has increased services for people with disability significantly but there is a need for it to ensure the availability of all forms of rehabilitation and increase the quota for disability allowances to meet the needs of families.It is imperative to improve mechanisms of monitoring the commitment of enacting tangible results from policies in order to ensure equitable distribution of disability allowance and rehabilitation services.

Service providers' perspectives in providing services to children with disabilities and their families in Bangladesh.

PURPOSE: This study seeks to gain an understanding of access to rehabilitation services and disability allowances for children with disabilities and their families from the perspectives of service providers. METHOD: We interviewed 21 service providers in Bangladesh and used thematic analysis to analyze data. RESULTS: Participants reported their perspectives on two major themes: (a) challenges in providing services to children with disabilities (e.g., limited availability of services and favouritism); and (b) facilitators in providing services to children with disabilities (e.g., cooperation from community leaders and satisfaction). CONCLUSION: Providers' perspectives revealed unique insights that might be interesting for policymakers, practitioners, and researchers. The findings reinforce the need to consider the availability of rehabilitation professionals and disability allowances to meet the greatest needs of children with disabilities and their families in Bangladesh. The findings also call for further research on policymakers' perspectives on addressing the systemic issues encountered by providers in providing support to children with disabilities and their families in Bangladesh.Implications for RehabilitationRehabilitation services are critical for children with disabilities to achieve optimal health, wellbeing and human rightsThe government of Bangladesh has increased rehabilitation services for children with disabilities, but there is a need for further investment to increase rehabilitation workforceIt is important to strengthen monitoring and evaluation of disability-specific programs to ensure equitable access to services for children with disabilities.

Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review.

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'. A total of 13 articles met the inclusion criteria. Families of children with disabilities received most of their support from informal sources (e.g. immediate family members, friends, and parents support groups). Parental stress was most often evaluated as the family outcome and was negatively linked to emotional support and childcare assistance from immediate family members. Movement and mobility therapy offered by rehabilitation professionals was found to improve children's walking patterns. Positive attitudes from community members were key facilitators to participation of children with disabilities in social activities. The review calls for urgent attention to research in low- and middle-income countries, particularly the extent of support families are receiving from government-led support systems.

Exploring access to government-led support for children with disabilities in Bangladesh.

While access to support for individuals with disabilities has attracted international attention, children with disabilities and their families continue to face a range of barriers that limit their timely access to the needed support, including health service. This is even worse for children with disabilities living in resource poor settings like Bangladesh. The objective of this study was to determine the extent to which families of children with disabilities have knowledge about and access to government support for their children with disabilities in Bangladesh. We employed a cross-sectional study among 393 families of children with disabilities who sought services from the Centre for the Rehabilitation of the Paralysed for their children with disabilities in Bangladesh. We used chi-square test to measure the association between categorical variables and, Mann-Whitney U-test to compare mean across different sub-groups. Overall, family members of children with disabilities have limited knowledge about and access to government support. We found a significant association between knowledge and access to government support (p<0.001). Family members with children with disabilities aged younger than six years had less access to government support (p<0.001). We thus concluded with an urgent call on government agencies and service providers to provide relevant and timely information to families of children with disabilities to enable them to access the needed support.