Family networks to improve outcomes in children with intellectual and developmental disorders: a qualitative study

International Journal of Mental Health Systems

Atif Rahman³  Zafar Iqbal¹  Fareed Aslam Minhas²  Mahjabeen Tariq¹  Najia Atif¹  Syed Usman Hamdani¹ 

[1] Human Development Research Foundation, Islamabad, Pakistan;Institute of Psychiatry, Rawalpindi, Pakistan;Institute of Psychology, Health & Society Child Mental Health Unit Alder Hey Children’s NHS Foundation Trust, University of Liverpool, Mulberry House, Eaton Road, Liverpool L12 2AP, UK

关键词: Peer supervision;    Family volunteers;    Task sharing approach;    Treatment gap;    Intellectual or developmental disorders;   

Others  :  801219
DOI  :  10.1186/1752-4458-8-7

 received in 2013-10-21, accepted in 2014-01-27,  发布年份 2014

【 摘 要 】

Background

There are at least 50 million children with an intellectual or developmental disorder in South Asia. The vast majority of these children have no access to any service and there are no resources to develop such services. We aimed to explore a model of care-delivery for such children, whereby volunteer family members of affected individuals could be organized and trained to form an active, empowered group within the community that, a) using a task-sharing approach, are trained by specialists to provide evidence-based interventions to their children; b) support each other, with the more experienced FaNs i.e. family networks, providing peer-supervision and training to new family members who join the group; and c) works to reduce the stigma associated with the condition.

Methods

We used qualitative methods to explore carers’ perspectives about such a care-delivery model.

Results

The key findings of this research are that there is a huge gap between the needs of the carers and available services. Carers would welcome a volunteer-led service, and some community members would have time to volunteer. Raising community awareness in a culturally sensitive manner prior to launching such a service and linking it to the community health workers programme would increase the likelihood of success. Gender-matching would be important. It would be possible to form family networks around the more motivated volunteers, with support from local non-governmental organizations. The carers were receptive to the use of technology to assist the work of the volunteers as well as for networking.

Conclusions

We conclude that family volunteers delivering evidence-based packages of care after appropriate training is a feasible system that can help reduce the treatment gap for childhood intellectual and developmental disorders in under-served populations.

【 授权许可】

   
2014 Hamdani et al.; licensee BioMed Central Ltd.

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