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The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

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Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

COVID-19: How to include marginalized and vulnerable people in risk communication and community engagement

UN WOMEN
TRANSLATORS WITHOUT BORDERS
March 2020

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Recommendations for inclusion of marginalised and vulnerable groups in risk communications and community engangement are made. Groups considered are: children; people with disabilities; women and girls; pregnant women; persons living with HIV; gender based violence survivors; refugees and migrants; elderly; people in existing humanitarian emergencies; people with pre-existing medical conditions; sexual and gender minorities; ethnic minorities.

Pastoral ministry and persons with disabilities: The case of the Apostolic Faith Mission in Zimbabwe

SANDE, Nomatter
2019

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Background: The Persons with Disability (PWD) are the minority group dehumanized in the church. The subject of disability is complicated because of the impact of the Judeo-Christian teachings. The Apostolic Faith Mission (AFM) in Zimbabwe is a leading Pentecostal church with a pastoral ministry theology which emphasises divine healing, miracles, signs and wonders. Thus, the space of PWD and how the PWD either connects or benefits from this Pentecostal heritage is a critical gap in this study.

 

Objectives: The objective of this study was to explore the construction of disability through the practices and processes of the pastoral ministry in the AFM.

 

Method: This study followed qualitative research and used the social model of disability as theoretical framework. The data were collected from 26 participants who are PWD and pastors using in-depth interviews, focus groups and participant observations.

 

Results: The results showed the AFM pastoral practices created invisible barriers that militate against PWD. Thus, the pastoral ‘divine solutions’ and ‘triumphalist messages and teachings’ are ‘prescriptive’ and ineffective in reducing ‘the plight of PWD in Zimbabwe’.

 

Conclusion: The study concludes that the pastoral ministry should be ‘one efficient vehicle’ with which the church can care for and ‘transform persons with disabilities’. Pastors should break the glass ceiling by expecting pastors to minister better and more effectively creating a safe space for persons with disabilities. A caring community should be the nature of both the AFM and the pastoral ministry responsible for meeting the needs of the persons with disabilities.

 

African Journal of Disability, Vol 8, 2019

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

 

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

 

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

 

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

 

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

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Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

The profile of disability grant applicants in Bishop Lavis, Cape Town

GOVENDER, T
MJI, G
2014

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Background: Disability grants in South Africa increased from 600 000 in 2000 to almost 1.3 million in 2004. This rise can be attributed to the HIV/ AIDS epidemic, South Africa’s high rate of unemployment and possibly an increased awareness of constitutional rights. The Western Cape, which has a disability prevalence of 3.8%, has also experienced an influx of applications. The study was conducted at Bishop Lavis Community Health Centre (BLCHC) in the Cape Town Metropole, Western Cape.

 

The primary aim of this study was to establish the profile of adults applying for disability grants at Bishop Lavis. The secondary aim was the determination of the degree of activity limitation and participation restriction by means of the International Classification of Functioning, Disability and Health (ICF) shortlist of activity and participation domains.

 

Methods: A descriptive study was conducted with emphasis on identifying and quantifying the relevant factors. The population studied included all prospective adult (18–59-year-old females and 18–64-year-old males) disability grant applicants in Bishop Lavis over a two-month period (April–May 2007). A structured, self-compiled questionnaire was administered during face-to-face interviews with applicants. The questionnaire included the demographic details of the applicants, disability/chronic illness/condition, educational level and social/living conditions. The second part of the questionnaire was based on the ICF shortlist of activity and participation.

 

Results: There were 69 respondents over the period of data collection. Of the 69 applicants who participated in the study, 45 (65%) received a temporary disability grant, 6 (8%) received a permanent grant and 18 (26%) applications were rejected. The results demonstrated that most applicants were females over the age of 50, were poorly educated with chronic medical conditions and were living in formal accommodation with good basic services but with minimal or no disposable income. The ICF questionnaire responses showed that the majority of respondents had no difficulty in most domains, except for the general tasks and demands (multiple tasks), mobility (lifting and carrying, fine hand use and walking) and domestic tasks domains, which showed high percentages of severe to complete difficulty. However, further statistical analysis showed no association between degree of difficulty in the above domains and eventual outcome of type of grant received.

 

Conclusions: This study confirmed that unemployment and a lack of income are the factors influencing patients to seek assistance in the form of disability grants. Most applicants had a chronic medical condition and reported functional restrictions but only received a temporary grant. This may be an indication that most patients require further evaluation before a final decision can be made. There is a need for a standardised, objective assessment tool for disability grant applications. A campaign to educate patients about disability grants could save patients and hospital medical services time and money.

Violence Against Persons with Disabilities in Bidar District, India

DEEPAK, S
KUMAR, J
SANTOSH, B
GORNALLI, S
MANIKAPPA, P
VYJANTHA, U
GIRIYAPPA, R
2014

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Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little informationabout their role in this regard.

 

Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it.

 

Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet Tables for analysis.

 

Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role.

 

Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie
2013

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

Parental Stress in Raising a Child with Disabilities in India

GUPTA, V B
MEHROTRA, P
MEHROTRA, N
2012

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Purpose: To determine parenting stress and its determinants among parents of children with disabling conditions in India.

 

Methods: The Parenting Stress Index – short form and a few open ended questions were administered to a convenience sample of sixty-six patient families in July, 2009 in the cities of New Delhi and Faridabad regions of Northern India through six non- governmental organizations (NGOs) that serve children with disabling conditions.

 

Results: Female sex of the child was associated with higher stress related to failure of the child to meet parent’s expectations and to satisfy the parents in their parenting role. Parents engaged in more lucrative and prestigious occupations had more stress than parents engaged in less prestigious and lucrative occupations irrespective of their income. Many parents reported receiving little support from their extended families in taking care of their child. Religion was found to be a common coping resource used by the parents.

 

Conclusion and Implications: Higher parenting stress in parents of girls raises the possibility of abuse and neglect. Little support from informal family resources underscores the need for developing formal resources for supporting the parents. The specific resources of parenting stress among parents of different socioeconomic status should be explored in future studies so that appropriate interventions can be planned.

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