Evaluating the Effectiveness of Interventions to Improve the Follow-up Rate for Children With Visual Disabilities in an Eye Hospital in Nepal: Nonrandomized Study.

BACKGROUND: Monitoring ocular morbidity among pediatric patients requires regular follow-up visits. We found that the follow-up rate was poor among children in our setting. Therefore, we intended to assess the effectiveness of 2 interventions-(1) counseling and (2) SMS text messaging and phone calls-to improve the follow-up rates. OBJECTIVE: This study aimed to evaluate the effectiveness of 2 interventions, counseling and SMS and phone calls group, as well as a routine standard care for improving the follow-up rate of pediatric patients. METHODS: A Nonrandomized, quasiexperimental design was used. Children (aged 0-16 years) with ocular conditions requiring at least 3 follow-up visits during the study period were included. A total of 264 participants were equally allocated to the 3 intervention groups of (1) counseling, (2) SMS and phone calls, and (3) routine standard care group. A 20-minute counseling session by a trained counselor with the provision of disease-specific leaflets were given to those in the counseling group. For the second intervention group, parents of children received an SMS text 3 days before and a phone call 1 day before their scheduled follow-up visits. Participants allocated for the routine standard care group were provided with the existing services with no additional counseling and reminders. Participants attending 3 follow-ups within 2 days of the scheduled visit date were considered compliant. The difference in and among the proportion of participants completing all 3 follow-up visits in each group was assessed. RESULTS: The demographic characteristics of the participants were similar across the study groups. Only 3% (8/264) of participants completed all 3 follow-up visits, but overall compliance with the follow-up, as defined by the investigators, was found to be only 0.76% (2/264). There was no statistically significant difference in the proportion of follow-up between the intervention groups. However, the proportion of participants attending the first and second follow-ups, as well as the overall total number of follow-ups, was more in the SMS and phone-call group followed by the counseling group. CONCLUSIONS: We did not find any evidence on the effectiveness of our interventions to improve the follow-up rate. The primary reason could be that this study was conducted during the COVID-19 pandemic. It could also be possible that the intensity of the interventions may have influenced the outcomes. A rigorously designed study during the absence of any lockdown restrictions is warranted to evaluate intervention effectiveness. The study also provides useful insights and highlights the importance of designing and systematically developing interventions for improving the follow-up rate and ensuring a continuum of care to children with visual disabilities in Nepal and similar contexts. TRIAL REGISTRATION: ClinicalTrials.gov NCT04837534; https://clinicaltrials.gov/ct2/show/NCT04837534. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/31578.

Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study.

BACKGROUND: Mobile health (mHealth) has been considered as a prominent concept in digital health and is widely used and easily accessible. Periodic follow-up visits, previously planned procedures, and rehabilitation services for stroke survivors have been cut down during the recent COVID-19 pandemic. Therefore, in this qualitative study we aimed to explore the need for a mobile application in stroke management by informal caregivers. METHODS: A phenomenological qualitative study was conducted from November 2020 to June 2021. Thirteen respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan, Malaysia. In-depth interviews were conducted. A comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed by using thematic analysis. RESULTS: Thirteen participants were involved in the interviews. All of them agreed with the need for a mobile application in stroke management. They believed the future stroke application will help them to seek information, continuous stroke home care, and help in the welfare of caregivers and stroke patients. CONCLUSIONS: The current study revealed two themes with respective subthemes that were identified, namely, self-seeking for information and reasons for using a stroke mobile application in the future. This application helps in reducing healthcare costs, enhancing the rehabilitation process, facilitating patient engagement in decision making, and the continuous monitoring of patient health.

Evaluation of the Impact of the First Wave of COVID-19 and Associated Lockdown Restrictions on Persons with Disabilities in 14 States of India.

BACKGROUND: There is a paucity of data to assess the impact of the COVID-19 pandemic on persons with disabilities (PwDs) in India. About 27.4 million cases were reported as of 27 May 2021. The continuing pandemic in the form of subsequent waves is expected to have negative repercussions for the disabled globally, particularly in India, where access to health, rehabilitation, and social care services is very limited. Therefore, this study aimed to assess the impact of the COVID-19 pandemic and lockdown restrictions on PwDs in India. OBJECTIVE: To determine the level of disruption due to COVID-19 and the associated countrywide lockdown restrictions on PwD in India during the first wave. METHODS: Using a cross-sectional, mixed-methods approach, data were collected from a representative sample of 403 persons with disabilities in 14 states in India during the COVID-19 first wave at two different points in time (Lockdown and post-lockdown phase). Factors associated with the negative impact were examined using the Chi-square test for associations. The paired comparisons between 'lockdown' with the 'post-lockdown' phase are presented using McNemar's test and the marginal homogeneity test to compare the proportions. Additionally, a subsample of the participants in the survey was identified to participate in in-depth interviews and focus group discussions to gain in-depth insights on the study question and substantiate the quantitative findings. The framework approach was used to conduct a thematic analysis of the qualitative data. RESULTS: About 60% of the PwDs found it difficult to access emergency medical services during the lockdown, and 4.6% post lockdown (p < 0.001). Likewise, 12% found it difficult to access rehabilitation services during the lockdown, and 5% post lockdown (p = 0.03). About 76% of respondents were apprehensive of the risk of infection during the lockdown, and this increased to 92% post lockdown (p < 0.001). Parents with children were significantly impacted due to lockdown in the areas of Medical (p = 0.007), Rehabilitation (p = 0.001), and Mental health services (p = 0.001). The results from the qualitative study supported these quantitative findings. PWDs felt that the lockdown restrictions had negatively impacted their productivity, social participation, and overall engagement in everyday activities. Access to medicines and rehabilitation services was felt to be extremely difficult and detrimental to the therapeutic benefits that were gained by them during the pre-pandemic time. None of the pandemic mitigation plans and services was specific or inclusive of PWDs. CONCLUSIONS: COVID-19 and the associated lockdown restrictions have negatively impacted persons with disabilities during the first wave in India. It is critical to mainstream disability within the agenda for health and development with pragmatic, context-specific strategies and programs in the country.

Exploring the Research Priorities for Occupational Therapy in India: A Descriptive Review

Background Occupational therapists are considered an important workforce for the rehabilitation of persons with disabilities globally. However, in India, the profession is just beginning to gain recognition within the national and state-level systems for health care. One of the reasons for this could be the paucity of specific research related to the development of occupational therapy (OT) and its benefits to the health systems. Therefore, it is of immense public health importance to explore the priorities and gaps in OT research in India. A vast majority of the OT research in India is promoted and disseminated through the All-India Occupational Therapists Association (AIOTA) and its annual national conference (ANC). Objectives The objective of this study is to descriptively review the conference s of the AIOTA ANC published in the Indian Journal of OT (IJOT), an official publication of the AIOTA, from 2017 to 2021. Study Design The study design was a descriptive, nonsystematic review. Methods Review of the s selected for the AIOTA ANC published in the IJOT from 2017 to 2021. A data extraction form was developed and used to synthesize data related to the clinical and demographic characteristics of OT research in India. Results The search yielded 218 s. State-level trends indicated that close to 85% of the research submissions were from four states and no submissions from the northeastern states until 2020. Nearly 60% of the s were clinical research with OT interventions. About 40% of these research s were related to pediatrics, followed by neurology (17%), musculoskeletal (15%), mental health (10%), and ergonomics and assistive technology (8%). There were 1%-2% of research s submitted related to coronavirus disease-2019 (COVID-19) and geriatrics. About 85% of the research s were related to impairment (39%), activity limitation (26%), and social participation (22%). Conclusion This review highlights the need for diversifying the research in OT in India. This is particularly important in relation to expanding from selected states to pan-India research and development, especially in the northeastern states. Furthermore, the focus of OT research must move beyond impairments and approach disability from the biopsychosocial perspective. It is also very important to diversify the research in OT to areas that are of public health importance such as COVID-19, geriatrics, noncommunicable diseases, and rehabilitation in health systems. Priority setting for research in OT in India is an important implication of this review.

Expert consensus for in-hospital neurorehabilitation during the COVID-19 pandemic in low- and middle-income countries.

Background: People with neurological dysfunction have been significantly affected by the ongoing coronavirus disease 2019 (COVID-19) crisis in receiving adequate and quality rehabilitation services. There are no clear guidelines or recommendations for rehabilitation providers in dealing with patients with neurological dysfunction during a pandemic situation especially in low- and middle-income countries. The objective of this paper was to develop consensus-based expert recommendations for in-hospital based neurorehabilitation during the COVID-19 pandemic for low- and middle-income countries based on available evidence.  Methods: A group of experts in neurorehabilitation consisting of neurologists, physiotherapists and occupational therapists were identified for the consensus groups. A scoping review was conducted to identify existing evidence and recommendations for neurorehabilitation during COVID-19. Specific statements with level 2b evidence from studies identified were developed. These statements were circulated to 13 experts for consensus. The statements that received ≥80% agreement were grouped in different themes and the recommendations were developed.  Results: 75 statements for expert consensus were generated. 72 statements received consensus from 13 experts. These statements were thematically grouped as recommendations for neurorehabilitation service providers, patients, formal and informal caregivers of affected individuals, rehabilitation service organizations, and administrators.  Conclusions: The development of this consensus statement is of fundamental significance to neurological rehabilitation service providers and people living with neurological disabilities. It is crucial that governments, health systems, clinicians and stakeholders involved in upholding the standard of neurorehabilitation practice in low- and middle-income countries consider conversion of the consensus statement to minimum standard requirements within the context of the pandemic as well as for the future.

Expert consensus for in-hospital neurorehabilitation during the COVID-19 pandemic in low- and middle-income countries [version 1;peer review: 1 approved, 2 approved with reservations]

Background: People with neurological dysfunction have been significantly affected by the ongoing coronavirus disease 2019 (COVID-19) crisis in receiving adequate and quality rehabilitation services. There are no clear guidelines or recommendations for rehabilitation providers in dealing with patients with neurological dysfunction during a pandemic situation especially in low- and middle-income countries. The objective of this paper was to develop consensus-based expert recommendations for in-hospital based neurorehabilitation during the COVID-19 pandemic for low- and middle-income countries based on available evidence.  Methods: A group of experts in neurorehabilitation consisting of neurologists, physiotherapists and occupational therapists were identified for the consensus groups. A scoping review was conducted to identify existing evidence and recommendations for neurorehabilitation during COVID-19. Specific statements with level 2b evidence from studies identified were developed. These statements were circulated to 13 experts for consensus. The statements that received ≥80% agreement were grouped in different themes and the recommendations were developed.  Results: 75 statements for expert consensus were generated. 72 statements received consensus from 13 experts. These statements were thematically grouped as recommendations for neurorehabilitation service providers, patients, formal and informal caregivers of affected individuals, rehabilitation service organizations, and administrators.  Conclusions: The development of this consensus statement is of fundamental significance to neurological rehabilitation service providers and people living with neurological disabilities. It is crucial that governments, health systems, clinicians and stakeholders involved in upholding the standard of neurorehabilitation practice in low- and middle-income countries consider conversion of the consensus statement to minimum standard requirements within the context of the pandemic as well as for the future.

Family Caregivers' Experiences and Coping Strategies in Managing Stroke Patients during the COVID-19 Pandemic: A Qualitative Exploration Study.

BACKGROUND: Stroke is a chronic disease that requires stroke survivors to be supported long-term by their families. This is especially because of the inaccessibility to post-stroke rehabilitation outside hospitals. The Corona Virus Disease 2019 (COVID-19) crisis and the pandemic restrictions in Malaysia are expected to exponentially increase the demand from family caregivers in supporting stroke survivors. Thus, this study aims to explore the burden, experience, and coping mechanism of the family caregivers supporting stroke survivors during the COVID-19 pandemic. METHODOLOGY: A phenomenological qualitative study was conducted from November 2020 to June 2021 in Malaysia. A total of 13 respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan. In-depth interviews were conducted with the participants. Comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three themes on burdens and experiences were identified. They were worsening pre-existing issues, emerging new issues, and fewer burdens and challenges. Two themes on coping strategies were also identified. They were problem-focused engagement and emotion-focused engagement. CONCLUSIONS: The COVID-19 pandemic has changed the entire system of stroke management. While family caregivers mostly faced the extra burden through different experiences, they also encountered some positive impacts from the pandemic. The integrated healthcare system, especially in the era of digitalization, is an important element to establish the collaborative commitment of multiple stakeholders to compensate burden and sustain the healthcare of stroke survivors during the pandemic.

Tele-Neurorehabilitation During the COVID-19 Pandemic: Implications for Practice in Low- and Middle-Income Countries.

The importance of neurorehabilitation services for people with disabilities is getting well-recognized in low- and middle-income countries (LMICs) recently. However, accessibility to the same has remained the most significant challenge, in these contexts. This is especially because of the non-availability of trained specialists and the availability of neurorehabilitation centers only in urban cities owned predominantly by private healthcare organizations. In the current COVID-19 pandemic, the members of the Task Force for research at the Indian Federation of Neurorehabilitation (IFNR) reviewed the context for tele-neurorehabilitation (TNR) and have provided the contemporary implications for practicing TNR during COVID-19 for people with neurological disabilities (PWNDs) in LMICs. Neurorehabilitation is a science that is driven by rigorous research-based evidence. The current pandemic implies the need for systematically developed TNR interventions that is evaluated for its feasibility and acceptability and that is informed by available evidence from LMICs. Given the lack of organized systems in place for the provision of neurorehabilitation services in general, there needs to be sufficient budgetary allocations and a sector-wide approach to developing policies and systems for the provision of TNR services for PWNDs. The pandemic situation provides an opportunity to optimize the technological innovations in health and scale up these innovations to meet the growing burden of neurological disability in LMICs. Thus, this immense opportunity must be tapped to build capacity for safe and effective TNR services provision for PWNDs in these settings.

PREparedness, REsponse and SySTemic transformation (PRE-RE-SyST): a model for disability-inclusive pandemic responses and systemic disparities reduction derived from a scoping review and thematic analysis.

BACKGROUND: People with disabilities (PwD) have been facing multiple health, social, and economic disparities during the COVID-19 pandemic, stemming from structural disparities experienced for long time. This paper aims to present the PREparedness, RESponse and SySTemic transformation (PRE-RE-SyST): a model for a disability-inclusive pandemic responses and systematic disparities reduction. METHODS: Scoping review with a thematic analysis was conducted on the literature published up to mid-September 2020, equating to the initial stages of the COVID-19 pandemic. Seven scientific databases and three preprint databases were searched to identify empirical or perspective papers addressing health and socio-economic disparities experienced by PwD as well as reporting actions to address them. Snowballing searches and experts' consultation were also conducted. Two independent reviewers made eligibility decisions and performed data extractions on any action or recommended action to address disparities. A thematic analysis was then used for the model construction, informed by a systems-thinking approach (i.e., the Iceberg Model). RESULTS: From 1027 unique references, 84 were included in the final analysis. The PRE-RE-SyST model articulates a four-level strategic action to: 1) Respond to prevent or reduce disability disparities during a pandemic crisis; 2) Prepare ahead for pandemic and other crises responses; 3) Design systems and policies for a structural disability-inclusiveness; and 4) Transform society's cultural assumptions about disability. 'Simple rules' and literature-based examples on how these strategies can be deployed are provided. CONCLUSION: The PRE-RE-SyST model articulates main strategies, 'simple rules' and possible means whereby public health authorities, policy-makers, and other stakeholders can address disability disparities in pandemic crises, and beyond. Beyond immediate pandemic responses, disability-inclusiveness is needed to develop everyday equity-oriented policies and practices that can transform societies towards greater resiliency, as a whole, to pandemic and other health and social emergencies.

Lockdown-Related Disparities Experienced by People with Disabilities during the First Wave of the COVID-19 Pandemic: Scoping Review with Thematic Analysis.

People with disabilities may be disproportionally affected by the COVID-19 pandemic. We synthesize the literature on broader health and social impacts on people with disabilities arising from lockdown-related measures. METHODS: Scoping review with thematic analysis. Up to mid-September 2020, seven scientific databases and three pre-print servers were searched to identify empirical or perspective papers addressing lockdown-related disparities experienced by people with disabilities. Snowballing searches and experts' consultation also occurred. Two independent reviewers took eligibility decisions and performed data extractions. RESULTS: Out of 1026 unique references, 85 addressed lockdown-related disparities experienced by people with disabilities. Ten primary and two central themes were identified: (1) Disrupted access to healthcare (other than for COVID-19); (2) Reduced physical activity leading to health and functional decline; (3) From physical distance and inactivity to social isolation and loneliness; (4) Disruption of personal assistance and community support networks; (5) Children with disabilities disproportionally affected by school closures; (6) Psychological consequences of disrupted routines, activities, and support; (7) Family and informal caregiver burden and stress; (8) Risks of maltreatment, violence, and self-harm; (9) Reduced employment and/or income exacerbating disparities; and (10) Digital divide in access to health, education, and support services. Lack of disability-inclusive response and emergency preparedness and structural, pre-pandemic disparities were the central themes. CONCLUSIONS: Lockdown-related measures to contain the COVID-19 pandemic can disproportionally affect people with disabilities with broader impact on their health and social grounds. Lack of disability-inclusive response and emergency preparedness and pre-pandemic disparities created structural disadvantages, exacerbated during the pandemic. Both structural disparities and their pandemic ramifications require the development and implementation of disability-inclusive public health and policy measures.

People with Disabilities and Other Forms of Vulnerability to the COVID-19 Pandemic: Study Protocol for a Scoping Review and Thematic Analysis.

OBJECTIVES: To develop a protocol for a scoping review mapping as well as thematically analyzing the literature on the effect of, and responses to, the coronavirus disease 2019 (COVID-19) pandemic, focused on people with disabilities with other layers of individual vulnerability or social disadvantage. METHODS: We will search scientific databases (Medline/PubMed, Web of Science, Scopus, AgeLine, PsycINFO, CINAHL, ERIC) and preprint servers (MedRxiv, SocArXiv, PsyArXiv). Google searches, snowballing, and key-informant strategies were also used, including a focus on the gray literature (eg, official reports). Peer-reviewed and preprint publications will be covered in 6 languages, and the gray literature in English. Publications will be included if they address individuals with disabilities; the COVID-19 pandemic or subsequent socioeconomic or occupational effects; and individual or social vulnerabilities, including any form of discrimination, marginalization, or social disadvantage. Two independent reviewers will perform eligibility decisions and key data extractions. Beyond mapping the literature, the results will thematically analyze any disproportionate risks people with disabilities and other forms of vulnerability experience in terms of being infected by COVID-19, having severe health consequences, and facing negative socioeconomic effects. Actions taken or recommended to reduce identified inequalities will also be synthesized. Our entire research team, with diverse backgrounds, will be involved in the synthesis. CONCLUSIONS: This review, which we plan to expedite, aims to inform policy makers, health authorities, disability advocates, and other stakeholders regarding the needs and ways to promote equity and disability-inclusive responses to the COVID-19 pandemic and the resultant socioeconomic shockwaves.

Occupational therapy: The key to unlocking locked-up occupations during the COVID-19 pandemic.

Occupations refer to the everyday activities that people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life. It is not always limited to just paid employment. Occupations of the global population have been adversely affected in one way or the other because of this COVID-19 pandemic. Four different key sects of occupations were majorly affected. These are the occupations of those who are or were COVID-positive, occupations of healthy individuals affected by COVID-19/lockdown, occupations of the population highly susceptible and vulnerable of contracting COVID-19 and occupations having a direct impact on global market, supply chain or economy. These occupations were locked up due to the pandemic lockdown. Occupational therapists can scientifically analyse occupations and help formulate exit strategies for the lockdown. They are experts who understand and study the different ways of measuring participation in occupation to develop innovative strategies and therapeutic interventions to facilitate individuals' engagement in occupations. They can unravel the pragmatic strategies for preventing transmission (physical distancing, hand hygiene, personal protective equipment usage and decontamination) despite engaging in occupations safely and effectively. Nourishing this niche and essential science is pertinent, not just in this pandemic context but also against a backdrop of health and social care research, policy, practice and education for the future.