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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

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.

Knowledge, Beliefs and Perception of Leprosy

SINGH, S
SINHA, A K
BANERJEE, B
JASWAL, N
2013

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Purpose: For intervention to be effective, it is essential that the knowledge, beliefs and perception of a specific social group are taken into account. This is particularly true of leprosy where the problems of social stigma and ostracism are more prominent than the disease itself. There are many misconceptions about the cause, methods of transmission, and treatment.

 

The main objectives of the study were to examine the socio-demographic profile of persons with leprosy and to explore their knowledge, beliefs and perception about the disease and its initial symptoms, within a specific socio-cultural milieu.

 

Method: Semi-structured interviews were held with a persons with leprosy at various clinics and care-homes for affected persons in and around Chandigarh, India. Those who had completed their treatment and those who were still undergoing treatment were included in the study. Data collection was done through case studies and in-depth interviews.

 

Results: The name of the disease varied across different geo-cultural zones. Many respondents who were afflicted with only red patches and had no ulcers, believed that they suffered from a skin disease which would turn into leprosy if proper medication was not received. The perception of 64.9 % of the respondents was that leprosy resulted from supernatural causes like God’s punishment, karma, and sin.

 

Conclusion: There is a need to educate persons with leprosy and their families about the etiology of the disease.

Attitudes of Parents towards Children with Specific Learning Disabilities

CHANDRAMUKI, D
VENKATAKRISHNASHASTRY, I
VRANDA, M N
2012

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Purpose: This study explored parental attitudes towards children with specific learning disabilities.

 

Method: The study sample comprised parents of 60 children (30 boys and 30 girls) with Specific Learning Disability (SLD) who attend the Child and Adolescent Psychiatry Out-Patient Department at National Institute of Mental Health and Neurosciences, Bangalore, India. The attitudes of parents were assessed using the Parental Attitude Scale.

 

Results: The results revealed significant differences related to gender of the children on various domains of the scale.

 

Conclusion: The study highlights the need to educate parents to lower their expectations for children with specific learning disabilities, and to strengthen the social support network of these children’s families.

Ageing in the twenty-first century : a celebration and a challenge

UNITED NATIONS POPULATION FUND (UNPF)
HELP AGE INTERNATIONAL
2012

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"This report, a collaborative effort of the United Nations and other major international organizations working in the area of population ageing, sheds light on progress towards implementing this Plan. It aims to raise awareness about the speed of population ageing and, more generally, about the experience of being old in our changing world. It recommends moving urgently to incorporate ageing issues into national development plans and poverty reduction strategies. It also shows that abuse, neglect and violence against older persons are much more prevalent than currently acknowledged, and points the way towards more effective prevention strategies and stronger legislation that can protect their human rights"

Disability and development: is the rights model of disability valid in the Arab region? An evidence-based field survey in Lebanon and Jordan

NAGATA, Kozue Kay
2008

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This paper reviews the process and outcome of constructing a "rights model of disability" which is culturally specific to Jordan and Lebanon. The objective of the empirical part was, to survey the current level of attitudes of non-disabled people towards their disabled fellows in Jordan, and to compare the attitudes of Lebanon's university students towards five different categories of disabled people (mentally disabled people, psycho-socially disabled people, physically disabled people, hearing impaired people and visually impaired people) to highlight the variations and diversity among them. It also examined the relationship between the attitudes and various demographic and social characteristics of the respondents. The set of findings was further tested and triangulated through meta-analysis of individual views expressed in the qualitative studies.

In Jordan, the attitude of 191 randomly selected non-disabled people was studied, using a Scale of Attitudes towards Disabled Persons (SADP). The participants from 4 communities of Jordan, exhibited overall negative attitudes towards disabled people. Socio-economic-demographic characteristics showed almost no difference regarding their attitudes towards disabled people.

In Lebanon, a more complex scale, composed of four sub-scales, namely a, "Baseline Survey of Student Attitudes towards People with a Disability" was used, to survey 94 university students' attitudes towards five different categories of disabled people, and a set of indices for future comparison was constructed. The results indicated the same pattern of gradations of attitude differences (found in other countries) towards persons with physical or sensory impairments (better), intellectual impairment (middle) and mental illness (worse). The main findings of this empirical field research showed particularly negative public attitudes towards people with intellectual impairment and mental illness in Lebanon.

Finally, the validity of the proposed rights model of disability and the empirical findings of this study, were further examined and co-validated through analysis of the collective views of those who took part in the questionnaire surveys and the participatory focus group discussions, which took place in Lebanon in 2005 and 2007, and in Jordan in 2005, as well as a series of intensive on-line and/or telephone interviews of a few informants comprising of disabled persons and experts. The policy implications of the findings are discussed.

 

Asia Pacific Disability Rehabilitation Journal, Vol 19, No 1

Zip zip my brain harts

BUCKLAND, Angela
et al
2006

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This book contains photographs by Angela Buckland interspersed with text by researchers interested in disability issues. Its aim is to..."increase public awareness of the needs and human rights of disabled people and their families"

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