Background Children’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.
To assess the needs of children and measure impact of services
To plan strategies in quality care and
To advocate the need of Children’s Palliative Care
Approach used Focus 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.
Children 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.
Conclusion Need 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.
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