Resources search

Effect of an Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes

HETTIARACHCHI, S
KITNASAMY, G
2013

Expand view

 

Purpose: Children with cerebral palsy who have associated feeding difficulties are at risk of aspiration and poor nutrition. This study aimed to measure the changes in knowledge, confidence, anxiety and behaviour among 25 Sri Lankan mothers with responsibility for feeding children diagnosed with cerebral palsy, after they attended an experiential workshop.

 

Method: Data collection was done through pre- and post-workshop questionnaires, observations and semi-structured interviews.

 

Results: There was a significant improvement in reported levels of knowledge and confidence and a decrease in the caregivers’ level of anxiety during mealtimes. The qualitative data analysis indicated changes in participant knowledge, particularly about the signs of aspiration and positioning during mealtimes. Observations showed better adherence to recommendations on communication, bolus size and utensils.

 

Conclusion: The findings support the utility of experiential training for caregivers, to ensure that children with cerebral palsy are fed safely.

Parent peer advocacy, information and refusing disability discourses

BELL, M
FITZGERALD, R
LEGGE, M
2013

Expand view

Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

Expand view

Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

The Application of ICF-based Functioning Data on Home Environment Adaptation for Persons with Disabilities

TONGSIRI, S
HAWSUTISIMA, K
2013

Expand view

Purpose: This study illustrates how the International Classification of Functioning, Disability and Health (ICF) domains and qualifiers could be used to create functioning profiles of persons with disabilities in order to plan environmental changes. The outcome of the interventions can be measured by before-and-after comparisons of these profiles.

 

Method: 33 persons with disabilities (11 each from three provinces), with an average age of 43 years, were interviewed between November 2011 and May 2012. 67% of them were male. The functioning profiles of all the subjects were used as guidelines for home environment adaptations.

 

Results: The data helped to understand the limitations of persons with disabilities and identified the areas that needed enhancement to improve their functioning. Modification lay-outs were provided for all 33 persons with disabilities.

 

Conclusion and Implications: It was demonstrated that the ICF framework could help create functioning profiles to guide modifications in the home environment. Future studies should examine whether ICF can measure actual changes that occur after the modifications.

What are the impacts of approaches to increase the accessibility to education for people with a disability across developed and developing countries and what is known about the cost-effectiveness of different approaches?

BAKHSHI, Parul
KETT, Maria
OLIVER, Kathryn
June 2013

Expand view

This study presents a mapping of existing evidence that provides information about the impact of initiatives that provide education for children with disabilities, and also identifies any studies that provide an analysis about the cost-effectiveness of existing initiatives. It is useful for policymakers, researchers, practitioners, parents of children with disabilities and the children themselves

Who’s on my side?

ALLIANCE FOR INCLUSIVE EDUCATION UK
Parents For Inclusion UK
March 2013

Expand view

“"This film features disabled children and young people, their siblings and family members talking about why allies are important. They also talk about the support they get, the support they want and what changes need to be made in education, health and social care services so that they can have real choice and control. It is useful for anyone interested in inclusive education"

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

Expand view

This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

Expand view

This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania

MCNALLY, Anna
MANNAN, Hasheem
2013

Expand view

Background: Although there exist laws, policies and standards in Tanzania that serve to protect and improve the lives of children with disabilities, the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. There is a lack of qualitative studies examining experiences in a developing context. This research aimed to fill that gap.

 

Objectives: The objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods.

 

Method: This was a qualitative, exploratory study and followed a phenomenological method. Purposive convenience sampling methods were used to recruit 14 carers in Moshi, Tanzania. Qualitative, semi-structured interviews were undertaken with all 14 participants.

 

Results: Five main themes emerged from the data which shed light on the carers experiences, namely, objective challenges in terms of financial challenges, employment issues and demands of care; subjective challenges in the form of stigma, isolation and pity; positive experiences such as the child’s progress, respect and happiness; material and financial needs; and coping mechanisms which included beliefs, support and attitudes.

 

Conclusion: The findings of this research were that objective challenges are common and more significant than subjective challenges. Positive experiences were not as easily identified by the participants as the challenges faced. However, having analysed the data, carers do not experience their roles as entirely negative. They simply need the resources to deal with objective challenges which in a developing context are not easily attainable.

E-bulletin