Structured Abstract:Purpose: To describe current care pathways for children with autism including enablers and barriers, as experienced by health professionals, education professionals, and families in South Wales, UK. Design/Methodology/Approach: A mixed-methods approach using focus group discussions, creative writing workshops and visualisation using rich pictures. Findings: The experiences of the care pathways differed significantly across the three groups. Health professionals described the most rigidly-structured pathways, with clear entry points and outcomes. Education professionals and parents described more complex and confusing pathways, with parents assuming the responsibility of coordinating the health and education activity in a bid to link the two independent pathways. All three groups identified enablers, although these differed across the groups. The barriers were more consistent across the groups (e.g. poor communication, missing information, lack of transparency, limited post diagnosis services and access to services based on diagnosis rather than need). Practical Implications: This research could inform the design of new services which are premised on multi-agency and multi-disciplinary working to ensure children with ASD receive joined up services and support. Originality/value: Although this study did not represent all professional groups or all experiences of autism, we examined three different perspectives of the ASD pathway. In addition, we triangulated high-level process maps with rich pictures and creative writing exercises, which allowed us to identify specific recommendations to improve integration and reduce duplication and gaps in provision.

The challenges identified during outcomes of the workshops were used as the basis for subsequent dissemination and implementation activities in the ATOME project, and in some countries the workshop proceedings already served as a stepping-stone for the first changes in regulations and legislation.

Our project, which concluded in 2015, aimed to improve the quality of life of children with life limiting illnesses in Maharashtra State in India, and nationwide in Malawi.Central to the project design was a multi team approach of engaging with expert model providers of children’s palliative care, global experts in children’s palliative care, national palliative care associations, and crucially, the children themselves.Six new sites were identified as being suitable for the incorporation of children’s palliative care into their existing service. The in-country team then developed and delivered training and mentorship to these new sites, building their capacity for children’s palliative care service delivery. The project also focused on advocacy to change restrictive policy, raise awareness and push for sustainable change. It was important to the project team that there was a strong element of beneficiary engagement with the project, both to strengthen the quality of the service and to provide a direct voice to policy makers.4294 new children received palliative care in the six additional sites over the project period.Children in each setting joined ‘Empowerment Groups’ where they could share their experiences and discuss the changes to the services that were happening around them. These groups had a strong effect on the project, improving confidence and understanding both among the children and their carers, a feeling of support and shared experience. In one setting, the children’s group met directly with the minister of health and inspired her commitment to supporting palliative care for children.The groups gave direct feedback to service providers, allowing for changes in the approach. The empowerment groups were credited with increasing demand for services as caregivers were keen to share their knowledge in the community and in some cases, conducting active case finding and referral to the new services.

BackgroundChildren’s Palliative Care Project of Indian Association of Palliative Care in Maharashtra, India, worked to increase government commitment to improve quality of life of children with life limiting conditions. Hospice UK, ICPCN-South Africa and Tata Memorial Centre, Mumbai were providing guidance and mentorship. The project was funded by DFID, UK. It aimed to set up three model sites in three different settings. The health care workers were given structured training. Educational material was developed.AimTo assess the needs of children and measure impact of servicesTo plan strategies in quality care andTo advocate the need of Children’s Palliative CareApproach usedFocus group discussions, one to one interactions and quality of life questionnaires were used to assess the needs and issues faced by children and their families. The inputs were used to plan future strategies and provide quality care by networking with hospitals, orphanages and organisations.FindingsChildren and caregivers need proper information about diagnosis and prognosis.Needs vary according to the disease trajectories:Caregivers in rural settings cannot afford to lose their daily wages. So children with CP, MR are neglected.Because of the remote geographical locations children cannot be taken to the rehabilitation facilities regularly.In spite of poverty and lack of facilities, caregivers are reluctant to keep the child away from the family.ConclusionNeed assessment helps to plan the care. Conventional concept of ‘Hospice’ may not be culturally acceptable by the caregivers. So different models of hospice care may be necessary for different conditions. Hospice care provides solace to patients and their caregivers and can be provided in terms of respite care, rehabilitation, home care and end of life care. Ideally there has to be a set up where all facilities are provided.