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Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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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.

Are children with disabilities in school and learning? Evidence from a household survey in rural Punjab, Pakistan

MALIK, Rabea
RAZA, Fizza
ROSE, Pauline
SINGAL, Nidhi
2020

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Invisibility of children with disabilities in data on educational access and learning is a key policy challenge for tracking progress towards the Sustainable Development Goals. In this article, we report findings from a household survey undertaken in rural Punjab, Pakistan. These data enable us to identify the extent to which children with disabilities are in school and learning the basics in literacy and numeracy. We find that, perhaps contrary to expectations, many of these children in this context are in mainstream (government and private) schools, although their chances of being in school are lower than their peers. We further find that overall levels of literacy and numeracy are low, even more so for children with disabilities. Our findings corroborate recent research from other countries. The paper highlights important lessons for the policy which are of relevance to other low-income contexts.

Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India

KAR, Anita
RADHAKRISHNAN, Bhagyashree
GIRASE, Trushna
UJAGARE, Dhammasagar
PATIL, Archana
2020

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Purpose:  The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.

 

Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team. 

 

Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.

 

Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Barriers in Dental Care Delivery for Children with Special Needs in Chennai, India: A Mixed Method Research

KRISHNAN, Lakshmi
IYER, Kiran
KUMAR, Parangimalai Diwakar Madan Madan
2019

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Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

 

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

 

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

 

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
January 2019

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This study reviews the attitudes and behaviours in rural Nepalese society towards women with disabilities, their pregnancy, childbirth and motherhood. Society often perceives people with disabilities as different from the norm, and women with disabilities are frequently considered to be doubly discriminated against. Studies show that negative perceptions held in many societies undervalue women with disabilities and that there is discomfort with questions of their control over pregnancy, childbirth and motherhood, thus limiting their sexual and reproductive rights. Public attitudes towards women with disabilities have a significant impact on their life experiences, opportunities and help-seeking behaviours. Numerous studies in the global literature concentrate on attitudes towards persons with disabilities, however there have been few studies in Nepal and fewer still specifically on women.

A qualitative approach, with six focus group discussions among Dalit and non-Dalit women without disabilities and female community health volunteers on their views and understandings about sexual and reproductive health among women with disabilities, and 17 face-to-face semi-structured interviews with women with physical and sensory disabilities who have had the experience of pregnancy and childbirth was conducted in Rupandehi district in 2015. Interviews were audio-recorded, transcribed, and translated into English before being analysed thematically.

 

BMC Pregnancy Childbirth 19, 20 (2019)

https://doi.org/10.1186/s12884-019-2171-4

Deinstitutionalization for children with disabilities - Technical guidance for UNICEF's engagement in national reform

JONES, Helen
2019

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This technical guidance was commissioned by the UNICEF Eastern Europe and Central Asia Regional Office to enable UNICEF Country Offices to advocate and support particular programmes and projects related to the deinstitutionalization of children with disabilities through:

  • Promoting better decision-making among policy makers and child welfare professionals in the region regarding deinstitutionalization of children with disabilities;
  • Supporting governments to understand the need for such work and to plan, monitor, evaluate and sustain the reforms, as well as linking these reforms to broader disability- inclusive changes across sectors and making a contribution to social justice;
  • Increasing political will, passion and vision for the development of a child care system to address the range of needs of children, stimulating preventive work to reduce overall numbers placed away from home, and promoting family-based alternatives for the majority of children in the care system

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia

TEO, Jing Xin
LAU, Bee Theng
2018

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Purpose: This study explores and compares perspectives of educators and parents regarding interventions used in managing Autism Spectrum Disorder (ASD) in Sarawak, Malaysia. Information on parental desires and limitations when selecting and maintaining management will aid in the development of strategies for ASD educators to work effectively with parents and caregivers, and vice versa.

 

Method: This qualitative research employed traditional question and answer interviews with 7 ASD educators and 30 parents. Interviews were semi-structured and questions were open-ended to allow for additional details to be relayed within the scope of the subject matter. Thematic analysis revealed overarching perceptions concerning parental attitudes towards involvement in their children’s interventions, and implications of cultural context.

 

Results: Perspectives were similar regarding the importance of confidentiality from educators and cultural factors playing a major role in content of intervention chosen by parents. Perspectives differed across four themes. Of significance was the way in which both samples viewed parental self-reliance in supplementing interventions and parental attitudes in effort and perseverance. 

 

Conclusion: Parental resources and culture influence ability and attitudes towards involvement. While educators may not agree on certain aspects, mutual appreciation of differing perspectives would benefit the children.

INCLUDE US! Good practices in the inclusion of persons with disabilities in Myanmar

HUMANITY & INCLUSION (HI)
2018

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In 2015, Humanity & Inclusion HI began the project: “Empowering persons with disabilities to contribute to equal access to basic social services and local policymaking processes in under-resourced areas of Ayeyarwady and Mandalay”. The project supported Disabled Peoples Organizations and other civil society groups to participate in the development of inclusive regional policies and programmes, and to promote good practices contributing to greater access to services for persons with disabilities. An aim was also to document, publish and disseminate these good practices throughout Myanmar, increasing awareness and understanding in order to sensitise people to disability inclusion and influence policy change. Rather than focusing on what is not working, this report seeks to shift attention to what has worked locally and how it could be replicated in other parts of the country, providing constructive, practical recommendations to decision-makers, service providers and other community groups in Myanmar. The report is related to two projects. The second is “Advocacy for Change: Fostering protection and rights of men and women with disabilities in Myanmar”. 

 

There are global recommendations. There are seven good practices:

  • Related to education:  Case Study I: Promoting Inclusion of children with disabilities in Middle Schools of Ayartaw. Case Study II: How the development of the teacher training promotes inclusion of all children in education
  • Related to economic life: Case Study III: How partnerships between private companies and organizations of people with disabilities can improve access to employment and vocational training
  • Related to social/community life: Case Study IV: Giving the Myanmar Deaf Community access to information.  Case Study V: How parental advocacy can make a difference
  • Related to political life: Case Study VI: Community advocacy in obtaining the National Registration Card. Case Study VII: Supporting people with disabilities to participate in Myanmar elections

 

A situational analysis of disability and aging in Myanmar

ZEITZER, Ilene
2018

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The interaction of aging and disability is explored in the context of Myanmar. Blindness and deafness data are taken from the census. Carer givers and the family are discussed. Goverment and civil society responses are also discussed.

A briefing paper is also available.

Online Parent Training: A Pilot Programme for Children with Autism and Neurodevelopmental Disabilities in Bangladesh

KARR, Valerie
BRUSEGAARD, Callie
KOLY, Kamrun Nahar
VAN EDEMA, Ashley
NAHEED, Aliya
2017

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Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.

 

Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.

 

Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.

 

Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.

Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Positive and Negative Impacts on Caregivers of Children with Intellectual Disability in India

ADITHYAN, G S
SIVAKAMI, M
JACOB, John
2017

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Purpose: The factor integral to the empowerment of children with intellectual disability is the presence and active involvement of support mechanisms such as their family and their caregivers. This study assesses both positive and negative impacts on parents/caregivers of children with intellectual disability in Oddanchatram block of Dindigul District in Tamil Nadu, India.

 

Method: Mixed method techniques (quantitative and qualitative) were used.

 

Results: Although many disturbing realities in the family situation were revealed, there were also positive impacts which were a hopeful sign.

 

Conclusion: Empowering the caregivers of children with intellectual disability is the first step towards inclusion of these special children in society. Various strategies to achieve this goal are discussed in the study. 

Effect of Multidisciplinary Intervention on Clinical Outcomes of Children with Autism Spectrum Disorder in Mumbai, India

DALWAI, S H
MODAK, D K
BONDRE, A P
ANSARI, S
SIDDIQUI, D
GAJRIA, D
2017

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Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

 

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

 

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

 

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

 

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

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