Resources search
"We bear it and accept our fate” Perceptions of healthcare access from people with disabilities in Cox’s Bazar
Expand view
In November and December 2021, Ground Truth Solutions (GTS) and the International Organisation for Migration’s (IOM) Needs and Population Monitoring unit (NPM) conducted qualitative interviews with persons with mobility and vision impairments from Rohingya refugee and host community populations with the aim of better informing and supporting agencies in developing disability-inclusive programmes and engagement activities. These interviews focused on access to health services, aiming to gain insight into how people with disabilities experience engaging with healthcare services – as well as perceived barriers to access. It also looked at health information needs so that the humanitarian community will be better equipped to identify gaps in programming, deliver more equitable services, and build trust with this marginalised group. To weave tangible experiences into the narrative and bring findings to life, this research took a ‘user journey’ approach to create a set of ‘personas’ derived from key informant interviews with Rohingya and Host Community people with disabilities in Cox’s Bazar, resulting in this highly illustrative report.
Reclaiming SRHR of women and girls with disabilities
Expand view
The manual Reclaiming SRHR of Women and Girls with Disabilities was developed as part of ARROW’s initiative, ‘Defending SRHR of Women and Girls with Disabilities’ with inputs and insights incorporated from regional experts from multiple disciplines whose contributions enriched the content of the manual. The manual aims to equip women and girls with disabilities with necessary SRHR information and knowledge to make informed choices free from coercion, violence, discrimination, and abuse. The Manual, therefore, contains detailed Modules on gender, sexuality, disability, rights, and their interlinkages in the context of addressing sexual and gender-based violence against women and girls with disabilities. Through this, it seeks to provide accessible information and knowledge on SRHR to women and girls with disabilities in various contexts, including in the face of the ongoing Covid-19 pandemic.
A Training of Trainers (ToT) manual on disability rights, gender and SRHR.
Step Towards Disability Inclusive Sexual Reproductive Health: Learnings from WISH2ACTION Project
Expand view
WISH2ACTION project is being implemented in Bangladesh since September 2018 and will end on 31 August 2021. During these years of implementation, HI worked to ensure the inclusion of persons with disabilities in the sector of sexual & reproductive health through community engagement as well as policy changes at the national level. Throughout the project period, many success stories & good practices were drawn as learning and could be used as a reference for future practices, and HI Bangladesh is delighted to introduce these documents of learning through this publication.
COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region
Expand view
An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.
COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities
Expand view
The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations.
Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons
Expand view
The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.
Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study
Expand view
Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.
Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.
Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.
Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.
The Quality of Life and Associated Factors in Indonesian Meningioma Clients after Surgery: A Cross-Sectional Study
Expand view
Purpose: The quality of life (QOL) of meningioma clients in Indonesia is poorly understood. This study aimed to investigate and examine the factors associated with the QOL of these meningioma clients after surgery, in order to help create an appropriate post-operative nursing intervention.
Method: This was a cross-sectional study. The QOL data was collected from a sample of 118 clients, using a EuroQol-5D-5L (EQ-5D-5L) questionnaire. Functional status, fatigue, illness perception and social support were assessed by the Barthel Index, FACIT-Fatigue Scale, Brief Illness Perception Questionnaire, and Medical Outcome Study Social Support Survey-6, respectively. Statistical analyses were conducted using the Chi-square test, Fisher’s exact test, and logistic regression test.
Results: After surgery, more than half of the 118 clients reported “ problems” in the EQ-5D dimensions of mobility (65%), self-care (57%), usual activities (70%), pain/discomfort (84%), and anxiety/depression (70%).The average postoperative EQ-5D index value (±SD) was 0.55 ± 0.26 while the median of EQ-VAS was 69.2 (IQR 40–90).Factors related to low QOL were age (p = 0.014), tumour grade (p = 0.0001), functional status (p = 0.0001), fatigue (p= 0.001), illness perception ( p = 0.0001), and social support (p = 0.001). Multivariate analysis showed that the most dominant factor associated with QOL was functional status (OR 6.728; Confidence interval=95%; p=0.008).
Conclusion and Implications:There is a correlation between age, tumour grade, functional status, fatigue, illness perception, and social support with the QOL of postoperative meningioma clients. The study recommends that these be included in their nursing assessment and an appropriate nursing rehabilitation programme be planned in order to improve their QOL.
Traffic crash injuries and disabilities : The burden on Indian society
Expand view
Road crashes endanger the lives and livelihoods of millions of road users globally and in India. The risk of a road crash in low-income countries is three times higher than compared to that in high-income countries. Not only does it lead to untold and unaccounted for suffering and loss for victims and their families, but also, it drains the GDP of countries by claiming millions of economically productive young lives6. While it is recognized that RTIs affect the developed and developing world in different ways, it also impacts poor households and disadvantaged sections of the population within developing countries differently. World Bank commissioned a survey-based assessment study in association with the Save LIFE Foundation (SLF) to determine such differential impacts more objectively in India. This study aims to capture the socioeconomic realities and nuances of road crashes at the sub-national level in India. It seeks to document inter-linkages between poverty, inequalities, road users, and road crash outcomes by analyzing data from four States in India, i.e., Uttar Pradesh, Bihar ,Tamil Nadu and Maharashtra. The four states have been selected on the basis of several criteria including demographic and geographical representation, magnitude of fatality burden and socio-economic parameters such as economic growth, poverty rate and social welfare.
Disability, Sociodemographics, and Discrimination: A Descriptive Analysis of Household Survey Data from Bangladesh
Expand view
Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.
Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.
Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.
Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.
Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India
Expand view
Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.
Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.
Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.
Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.
Disclosure of Disease among Women affected by Leprosy: A Qualitative Study
Expand view
Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.
Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.
Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.
Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.
User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan
Expand view
Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.
Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.
Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.
Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.
Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study
Expand view
People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.
Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study
Expand view
Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.
Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.
Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.
Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.
Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors
Expand view
Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.
Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.
Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.
Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.
Management of Undergraduate Community-Based Rehabilitation Programmes in the Philippines: A Cross-Sectional Survey
Expand view
Purpose: The survey aimed to identify common strengths and weaknesses regarding the characteristics, management and implementation of Community-Based Rehabilitation (CBR) training in the undergraduate curriculum of Schools of Physical Therapy in the Philippines, and make recommendations for improvement.
Method: A survey was conducted with the academic heads of CBR departments in 10 Physical Therapy schools. The institutions were selected through cluster sampling according to regional location. Nine of these were private institutions. Data was collected through a 24-item self-assessment survey distributed to the heads of the participating colleges /departments.
Results: A number of strengths and weaknesses were identified. The strengths were: all schools had a 1 to 2-month clinical CBR course integrated into their undergraduate curriculum; CBR courses were supported by a course syllabus, learning outcomes, student assessment and clinical training manual; 80% of institutions had implementing policies and guidelines governing management of the CBR programme(s); at least one physiotherapist was involved in the management of the CBR programme(s); and, CBR activities were delivered in coordination with key stakeholders management, with emphasis on delivery of physical therapy services, disability prevention, health education, participation of persons with disabilities and community awareness. The weaknesses were: no head/programme coordinator for 30% of CBR programmes; 40% did not have clinical coordinators as designated management positions in the CBR programme; only 50% of academic staff received formal CBR training, of which 80% was provided through CBR summits and professional interaction with other physical therapists; and, only 50% of schools adopted a multidisciplinary approach to service delivery which was focused on the Health domain of the CBR Matrix.
Conclusion: The CBR component of the undergraduate physical therapy curriculum in the Philippines can be improved. A shift in the teaching to transdisciplinary care and inter-professional learning is recommended. Regular review of the CBR indicators should be done by the schools, including the key stakeholders. Challenges for CBR implementation were recruitment of community volunteers as CBR workers, availability of indigenous resources and finances to support CBR activities, and family participation in the rehabilitation of a relative with a disability. Each school should determine whether current human resources and training are adequate. Schools must be encouraged to jointly identify common problems in CBR education and share solutions.
Physical Activity, Enjoyment and Quality of Life among Institutionalised Older Adults in Malaysia: A Cross-Sectional Study
Expand view
Purpose: In many nations across the world it has become a priority to stimulate increased physical activity (PA) among elderly persons. This study aimed to find the association between physical activity patterns and enjoyment of physical activity and health-related quality of life (HRQoL) among institutionalised older adults in Malaysia.
Method: A sample of institutionalised older adults (n=134, mean age = 73.72; SD = 8.59) was recruited from the Klang valley in Malaysia. In cross-sectional analyses, their physical activity, enjoyment of physical activity and quality of life were screened using the Physical Activity Scale for the Elderly, the 8-item Physical Activity Enjoyment Scale and the EuroQuol-5 Dimensions-5 Levels questionnaires, respectively. High levels of physical activity were associated with enjoyment of physical activity and health-related quality of life.
Results: In total, 41% of the participants met the guidelines of the Physical Activity Scale for the Elderly and 53% enjoyed physical activity. A positive correlation was found between the level of physical activity and its enjoyment (rs = .355, p <.001). Significant correlations were recorded between the dimensions of health-related quality of life and the level of physical activity (p < 0.001), except for pain/discomfort and anxiety/depression.
Conclusion: Providing opportunities for institutionalised older adults to engage in a variety of activities might help them to identify the kind of physical activity they enjoy and facilitate a lifelong physical activity routine.
A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic
Expand view
The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.
Pages
E-bulletin
Source e-bulletin on Disability and Inclusion