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The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

 

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

 

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

 

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

Online resource for parents and carers of children with autism

SIVARAMAKRISHNAN, Shobha
March 2015

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An information resource for the parents, carers and any other health professionals involved in the welfare of children on the autism spectrum. Within this document, it is outlined what is meant by the term 'autism', possible signs to look for in assessing and diagnosing a condition on the spectrum, associated physical or mental impairments which can be associated with a condition on the spectrum, and finally how a healthcare or other relevant professional (eg. education) may be best able to manage the condition in a variety of conditions

Note: The user has given permission for the uploaded document to be reproduced and made publicly available on the Source website

‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs

PEARCE, Emma
2015

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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 1

For Michael Charlie: Including girls and boys with disabilities in the global South/North

STIENSTRA, Deborah
2015

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Recognizing that there are pockets of the global South in the global North, I illustrate in this paper how Indigenous and northern children with disabilities and their relationships with their care providers have been rendered invisible and excluded by jurisdictional disputes between levels of government, an ongoing drive to institutionalize children with disabilities and longstanding colonial and capitalist values and systems. The paper highlights how Jordan’s Principle, an Indigenous childfirst response offers a small first step in ensuring children with disabilities in Indigenous and northern communities in Canada, access to necessary services in their communities.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India

SHARMA, Kriti
December 2014

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This in-depth, illustrated report on the abuses of female patients with psychosocial or intellectual disabilities at institutions in India found that patients experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Easy-to-read version, summary and video also available

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India : summary and key recommendations

HUMAN RIGHTS WATCH (HRW)
December 2014

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This illustrated summary presents the key findings and recommendations of the full report which found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Full report, summary report and video also available

Women and girls with a disability in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This easy-to-read summary uses simple language and clear illustrations to succinctly present the key principles of the full report: “Treated worse than animals: abuses against women and girls with psychosocial or intellectual disabilities in institutions in India”. The report found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights

 

Note: Full report, summary and video also available

Women institutionalised against their will in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This short video highlights the situation of female patients with psychosocial or intellectual disabilities at institutions in India. In conjunction with the report by Human Rights Watch, it calls for the better treatment of women and girls in institutions and increased de-institutionalization

 

Note: Full report, summary and easy-to-read version also available

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal

ZUURMOND, Maria
et al
December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal. The research looks at the experiences of 21 children aged 6 to 16 years (8 of them had dropped out of school while one had never been enrolled) through in-depth interviews conducted with 21 families (20 caregivers and 13 children), 9 key informant interviews, and visits to two special schools and one integrated school. The report presents the findings and makes recommendations for the way forward

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal : executive summary

December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This executive summary report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal

Perceptions of psychosocial disability amongst psychiatric service users and caregivers in South Africa

BROOKE-SUMNER, Carrie
LUND, Crick
PETERSEN, Inge
2014

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Background: In many parts of South Africa there is little support for people with psychosocial disability caused by schizophrenia, beyond provision of psychotropic medications. Appropriate community-based psychosocial rehabilitation interventions are a crucial element of mental health service development.

 

Objectives: This study aimed to use an explanatory model of illness framework to document experiences of illness, disability and recovery amongst service users with schizophrenia and their caregivers in a poorly resourced area in the North West Province. Data were used to provide recommendations for a contextually appropriate non-specialist facilitated group psychosocial rehabilitation intervention.

 

Method: Eighteen in-depth individual interviews were conducted: nine with schizophrenia service users and nine with caregivers. Interviews were conducted by two trained field researchers; both clinical psychologists fluent in the first language of participants. All interviews were recorded, translated and transcribed. Data were thematically analysed using NVivo 9.

 

Results: Participants linked the illness to witchcraft, poverty and stress. Family conflict was recognised in the course of the illness, causing stress and challenges for emotional well-being. Knowledge of diagnosis and biomedical treatment was minimal. Key factors recognised by service users as promoting recovery were the ability to work, and the support of traditional healers and religious structures.

 

Conclusion: Based on the findings of this study, a group psychosocial rehabilitation intervention emerged as a recommendation, with the incorporation of psycho-education, adherence support, coping skills, and opportunities for income generation and productive activity. The importance of also enlisting the support of religious leaders and traditional healers in supporting recovery is emphasised.

Exploring a Model of Effectual Learning for a Student Speech Pathology Placement at a Community-Based Rehabilitation (CBR) Centre in Malaysia

VAN DORT, S
WILSON, L
COYLE, J
2014

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Purpose: Speech-language pathologists in Malaysia typically do not work within CBR. Therefore, exploring the use of services through a non-traditional student placement was a crucial first step in understanding how to develop capacity for such services. It was also important to develop an understanding of the ways in which the implementation of this student placement influenced learning in the context of a Malaysian CBR programme.

 

Method: An action research study was designed to implement and evaluate student speech-language pathology (SLP) placement within a Malaysian community-based rehabilitation (CBR) centre for children with communication disabilities. Data collection involved the learning experiences of key adult stakeholders (students, workers, parents, and the principal research investigator (PI) or lead author).

 

Results: Study findings indicated that all adult learners became better empowered by working together. Workers involved in impairment-focussed rehabilitation activities grew in understanding and skills when supported by relevant professionals.The importance of mentoring as a learning-teaching relationship was demonstrated.

 

Conclusion: While the study has indicated that the setting is beneficial as a student placement, the development of a specialisation in CBR for allied health professionals would be a relevant way forward in the Malaysian context.

Assessing Parental Role as Resource Persons in Achieving Goals of Early Detection and Intervention for Children with Hearing Impairment

ANSARI, M S
2014

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Early detection and intervention for any degree of hearing loss is critical to the linguistic, social and educational development of children with auditory deficit. Since parents and family members are in a position to identify hearing loss at an early stage, they can play a vital role in achieving the goals of early identification and intervention for their children.

 

Purpose: This study was conducted to determine the age at which parents and significant others begin to suspect hearing impairmentin their children, and to advocate for using them as resource persons in the early detection of hearing loss.

 

Method: Parents of children with hearing impairment were retrospectively surveyed and interviewed to determine the age at which suspicion, diagnosis, fitting of amplification and initiation of interventions occurred.

 

Results: Interviews revealed the average age to be 16.5, 24.3, 31.7 and 33.4 months, for suspicion, diagnosis, fitting of amplification and initiation of early intervention for hearing loss respectively. The obtained age of suspicion is lower than the age of identification of hearing loss reported in Indian literature. The current study found delays in diagnosis and fitting of amplification, both of which are essential to initiate early remedial programmes which facilitate development of speech and language skills in children with hearing impairment. Surprisingly, it was found that these delays were caused by professional failures.

 

Conclusion: It is emphasised that parents are in the best position to detect hearing problems in their children, and can be effectively utilised as manpower/ equal partners in achieving the goal of early identification of hearing loss. The study outlines appropriate ways and means to facilitate early identification and provide effective intervention for children with hearing impairment.

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Characteristics and Quality of Life Among People Living with HIV at Drop-in Centres and Shelter Homes in Malaysia

SIAH, P C
TAN, J H
2014

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Purpose: The aim of the study was to examine whether there are any significant differences in demographic characteristics and health-related Quality of Life (QoL) among people living with HIV (PLWH) at shelter homes and drop-in centres in Malaysia.

 

Method: 117 PLWH were recruited by using the purposive sampling method. Data were collected through a questionnaire survey.

 

Results: Significant differences were found between PLWH at shelter homes and drop-in centres, in their demographic characteristics and in the 3 factors in the HIV/AIDS-Targeted Quality of Life Instruments (HAT-QoL) – namely, overall function, health worries, and provider trust.

 

Conclusion: Due to the differences in characteristics and QoL among PLWH in these two settings, different approaches are suggested to assist PLWH from shelter homes and drop-in centres.

“We can also change” Piloting participatory research with persons with disabilities and older people in Bangladesh

BURNS, Danny
OSWALD, Katy
November 2014

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Sightsavers, HelpAge International, ADD International and Alzheimer’s Disease International worked together with the Institute of Development Studies (IDS) to bring the perspectives of those who live in poverty or who are highly marginalised into post-2015 policy making. The aim of the research was to understand better the experiences of social, political and economic exclusion of persons with disabilities and older people in Bangladesh from their own perspectives. Two groups (community and NGO) of peer researchers collected 70 stories from poor and/or excluded persons with disabilities and older people from each of the two sites: Bhashantek, an urban slum in Dhaka; and Cox’s Bazar, a rural area in southeast Bangladesh. From the stories collected and analysed in workshops, the peer researchers identified 13 priority areas that affect persons with disabilities and older people: accidents and disasters; livelihoods; access to education; medical treatment; family support; exclusion and mistreatment; superstition; access to services; mobility; marriage; land; rape and sexual abuse; the role of grassroots community-based organisations. Recommendations from the researchers are made in each area. The peer research programme was evaluated and guidelines for its use are provided.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

Knowledge of, beliefs about and attitudes to disability: implications for health professionals

MASASA, T
IRWIN-CARRUTHERS, S
FAURE, M
2014

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Background: South Africa is a multicultural, multiracial and multilingual nation with many different values, traditions and cultural practices. Different belief systems may give rise to different attitudes and practices relating to disability, which may impact on rehabilitation. The purpose of this study was to investigate the knowledge, attitudes and beliefs relating to disability in three broad cultural groups in the Western Cape.

 

Method: Sixty primary caregivers were interviewed by using a knowledge, attitude and belief (KAB) survey in a structured interview format. Probability and non-probability (systematic and purposive) sampling were used. The study used both quantitative and qualitative methods.

 

Results: While caregivers from coloured and white communities generally had become acquainted with disability from an early age, caregivers in black communities often only learnt about disability following the birth of a disabled child. All caregivers had only a rather rudimentary knowledge of the causes of disability, but held positive attitudes towards people with disabilities and their integration into society. The qualitative data showed some differences in beliefs between the three groups in relation to the causes of disability and the need for rehabilitation. The data also revealed negative experiences across the groups in relation to education and the availability of transport, particularly amongst caregivers from black and coloured communities.

 

Conclusions: Health professionals need to understand the culture, values, beliefs and expectations of their clients when providing rehabilitation services within a community-based model. There appears to be a need for improved disability awareness in schools and amongst transport service providers.

Independent by not alone. Global report on the right to decide

LAURIN-BOWIE, Connie
Ed
June 2014

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Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) reflects a fundamental shift in thinking: it asserts that with support all people with intellectual disabilities are able to make decisions and have control in their lives. This Global Report presents the perspective of people with intellectual disabilities and our families on the right to decide. Over two years, over 600 self-advocates, family members, disability advocates, and professionals participated in discussions motivated by Inclusion International's Global Campaign on the Right to Decide. Additionally, more than 80 organizations from more than 40 countries worldwide contributed.

Children with Disability in Nepal: New Hope Through CBR?

MOL, Tanja Ingeborg
BRAKEL, Wim Van
SCHREURS, Merel
2014

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Purpose: This study assesses the impact of a community-based rehabilitation (CBR) programme on the quality of life (QoL) of children with disability and their families.

 

Methods: A qualitative approach was applied, using two techniques - a ranking line and semi-structured interviews. Nineteen children (ranging from 4 –18 years of age) were interviewed in their homes located in three villages - Chapakhori, Bokraha and Madesha - in Nepal.

 

Results: Children with disability and their families ranked physical health, psychological health, empowerment and level of independence as the most important factors for their QoL. Of the 19 children, 13 had experienced positive changes in their life and 1 child reported a negative change. The positive changes related mainly to their physical health and functioning. The impact of these changes was felt in the ‘social’, ‘level of independence’ and ‘empowerment’ outcome categories. The children mentioned that they had more friends, experienced less stigma, could go to school and were more hopeful about the future.

 

Conclusions: This CBR programme has brought about changes in the QoL of all children with disability and their families. The majority of them reported a positive impact.

 

 

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