Participatory Action Research Project on Family Needs: Experiences of Professionals in Providing Support Services to Zambian Parents of Children with Autism.

Background: The role of professionals in the attainment of sustainable development of quality health for families of children with Autism Spectrum Disorders (ASD) is critical mainly in the Lower - and Middle-income nations where ASD is hardly known. Parents of children with ASD experience higher stress levels to care for these children. The stress levels are further compounded when there is inadequate support services provision from professionals. There is limited publication in Zambia on the barriers and challenges that professionals face in providing support services to these families.

Objectives: The aim of the study was to determine professional experiences in providing formal support services currently available to families of children (ASD) in Zambia and explore how the use of advocacy, professional-parent collaboration could be used to empower families, meet their support needs through Participatory Action Research (PAR) approach.

Methods:

A qualitative, Participatory Action Research (PAR) design was employed to generate data. Purposeful sampling was used to recruit 21 professionals from the Lusaka Province of Zambia under the Ministries of Health, General Education, Community Development and Social Welfare, Zambia Agency for Persons with Disabilities and Teaching Council of Zambia. Participants had more than three years working experience with ASD families. They were drawn from both the private and public sectors and rural and urban settings. Semi-structured interviews, document analysis conference proceedings, participant observations and field notes were employed to collect data. Data was analysed using thematic analysis and Dedoose (ongoing).

Results: Preliminary results indicate that professionals face barriers to provide services which included; lack of standardised and cultural friendly instruments for diagnosis. Lack of a National Policy Framework that support autism services. Some professionals faced discrimination fellow workers at working places. There was pressure from parents for immediate results about child’s condition. The existing professional groups in line Ministries are uncoordinated, fragmented and operate through social media as opposed to Continuous Professional Development meetings. This has led to internal and external conflicts amongst the professionals on the type of treatment and intervention to provide to families

Conclusions:

There is a need to establish a national policy on ASD. Further training is needed amongst professionals to avoid wrong diagnosis and wrong labelling of the child. Currently, Zambia has less than 10 occupation therapists and less than 50 speech therapists against 17million people. Professionals that have set up private institutions such as hospitals, schools and assessment centres need government financial support to reduce the costs of services provision to families. Public employees needs an extra duty stipend as a motivation.