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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Purpose: This study explores the perceptions, knowledge and attitudes of LHWs towards children with disabilities in Pakistan. It considers the feasibility of utilising the LHWs for prevention, early identification and management of disabilities for these children in the community.

Methods: Two Focus Group Discussions (FGDs) were conducted with 15 Lady Health Workers (LHWs), and two In Depth Interviews (IDIs) with LHWs of both a semi-urban and a rural community of Pakistan.

Results: LHWs were found to have major concerns and strong emotions regarding children with disabilities. They also revealed the insensitive attitude of community members towards these children. While they understood the major types and magnitude of disabilities better than lay persons, they lacked the knowledge to manage these disabilities. Consanguineous marriages were identified as the main cause of disabilities. LHWs reported that education and health facilities were lacking in semi-urban and rural areas, and demanded that the government provide these facilities for the children. They also expressed their willingness to work for these children, provided they had the approval of higher authorities and were given proper training.

Conclusions: This qualitative exploratory study recommends that the existing primary health system be reviewed, and the possibility of introducing community based rehabilitation services, utilising LHWs’ services for children with disabilities, be examined. In this regard, it is imperative to assess the existing training modules of LHWs and to introduce modules on prevention, early identification, and management of children with disabilities. It is also necessary to employ mass media to spread awareness about persons with disabilities.