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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. 

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

MANNAN, H
O'BRIEN, P
MCCONKEY, R
FINLAY, F
LAWLOR, A
HARRINGTON, G
2011

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Purpose: Respite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services. However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.

 

Method: This qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers. Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters), were held in seven locations across the Republic of Ireland.

 

Results: Three main themes dominated the discussions. The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers. The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability. The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services.

 

Conclusions: Respite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals. This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.

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