We want to learn (the treatments) and come back and be with our families because life is to be with our families – we people want to come back to the land, we’re connected to the country. ... When we’re in hospital we don’t feel free – there’s too many houses [in the town], too many cars. But here – we go out hunting, be with our kids, our families, our people. (Home haemodialysis patient, November 2010)
Self care therapies –PD and HD – are both actively promoted to suitable patients as means to move back to their home communities. The home–based therapies teams have dedicated teaching areas within or near the satellite unit in Alice Springs. They have developed specific, culturally–appropriate programs to teach patients and have a series of patient–friendly resources to support them. Being a dialysis patient in a home community is not without challenges, but it addresses the primary concern of patients to be reconnected to family and community. Dialysis patients consulted for this Study reported that their first preference was to have their dialysis in their home community or as near as possible. They confirmed the importance of family and home connectedness as the key criteria.
However, despite active promotion, and the opportunities to return home, currently those on self–care therapies comprise less than 10% of patients in the region, well below the national levels. There are 11 patients undertaking (or training in) self–care haemodialysis and nine undertaking PD. For self–care and community–based therapies, careful consideration of the supports that can be provided by community organisations is important. Such services can determine the effectiveness and sustainability of this treatment model.
A critical issue around self–care home therapies is the need to have a carer (or carers) within the family to support the patient. Carers reported carrying a considerable burden supporting their family and caring for a dialysis patient. Stakeholders indicated there are limited, if any, carer respite services. With all self–care therapies, service providers indicated concerns regarding the growth in needs of patients over time as they age and become frailer. These patients would likely need additional supports and services if they are to remain in their communities.