Indigenous patient experiences of returning to country: a qualitative evaluation on the Country Health SA Dialysis bus

Abstract

BackgroundRates of End-Stage Kidney Disease among Aboriginal and Torres Strait Islander (Indigenous) Australians in remote areas are disproportionately high; however, haemodialysis is not currently offered in most remote areas. People must therefore leave their ‘Country’ (with its traditions and supports) and relocate to metropolitan or regional centres, disrupting their kinship and the cultural ties that are important for their wellbeing. The South Australian Mobile Dialysis Truck is a service which visits remote communities for one to two week periods; allowing patients to have dialysis on ‘Country’, reuniting them with their friends and family, and providing a chance to take part in cultural activities. The aims of the study were to qualitatively evaluate the South Australian Mobile Dialysis Truck program, its impact on the health and wellbeing of Indigenous dialysis patients, and the facilitators and barriers to using the service.MethodsFace to face semi-structured interviews were conducted with 15 Indigenous dialysis patients and 10 nurses who had attended trips across nine dialysis units. Realist evaluation methodology and thematic analysis established patient and nursing experiences with the Mobile Dialysis Truck.ResultsThe consequences of leaving Country included grief and loss. Barriers to trip attendance included lower trip frequencies, ineffective trip advertisement, lack of appropriate or unavailable accommodation for staff and patients and poor patient health. Benefits of the service included the ability to fulfil cultural commitments, minimisation of medical retrievals from patients missing dialysis to return to remote areas, improved trust and relationships between patients and staff, and improved patient quality of life. The bus also provided a valuable cultural learning opportunity for staff. Facilitators to successful trips included support staff, clinical back-up and a co-ordinator role.ConclusionsThe Mobile Dialysis Truck was found to improve the social and emotional wellbeing of Indigenous patients who have had to relocate for dialysis, and build positive relationships and trust between metropolitan nurses and remote patients. The trust fostered improved engagement with associated health services. It also provided valuable cultural learning opportunities for nursing staff. This format of health service may improve cultural competencies with nursing staff who provide regular care for Indigenous patients.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3849-4) contains supplementary material, which is available to authorized users.

Opportunities for improving patient experiences among medical travellers from Canada’s far north: a mixed-methods study

“…However, not all travellers were aware of or able to connect to services and resources. Recently, culturally relevant services have been shown to improve the experience of Indigenous patients requiring medical relocation for dialysis in South Australia,30 and have been identified as especially important for palliative care and cancer services provided away from home in Northern Territory, Australia 31 32…”

Patients’ and caregivers’ perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies

“…Having treatment options close to home was important to First Nations patients so they could pass on health information to the younger generations-"to look after yourself, or else you end up like me, stuck to the chair". 20 Australian indigenous patients believed that they would "learn a lot better" about kidney disease and treatment choices if it was provided by people from their own culture. 21 Lacking trust in clinicians Patients found it difficult to make decisions about treatment if they thought their clinicians were withholding or reluctant to share information-"[they] don't give it [information] the right way.…”

“…24 In a study conducted in India, travelling from remote villages to dialysis, often at night after dialysis sessions, was particularly exhausting because the roads Open access But that time of first meetings with the specialists, with renal nurses, they was explaining a lot of things…which actually just went in one ear and out the other, because you're just still going through the initial shock. 21 "The education is low … I was here [renal center] for almost two years but I didn't have any idea about what is affecting me … .and there is some secrecy surrounding the whole thing 22 "I didn't know it was going to take a long time like this…yeah, I felt within 6 months I have to be cured" 22 16-18 20 But the majority of our people are very shy, they frightened to ask questions of anybody, specially a white person and that's why they find they got a few problems, because they frightened to ask for some advice" 18 7 16 18-20 29 33 Lacking trust in clinicians 'There are some people I can't talk to. I had this bad time with my doctor, and I just walked out, he just didn't know how to talk to me and so I just said nothing and said I had to go'.…”

“…20 "I miss out on hunting Kangaroo, showing kids the Country, teaching our children about our dreaming". 20 'Moving away from family is important, we've got family at home that rely on us a lot with the grandchildren and we lose that too and we're letting them down' 16 16 18 20 22 Preserving a sense of belonging in community 'We go to a lot of hui (meetings), to the marae (cultural meeting house). That was a lot of the reason why I wanted to go home too.…”

“…So, they can't go, they gonna stay in a hotel? They are trying to raise that issue but nobody listens to us' 20 "I am finding difficulty in getting an alliance for marriage as I am burdened with father's care and people shy away from my marriage proposals" and a woman complained that, "My neighbors and relatives don't come to us anymore 23 if you have land or livestock you are forced to sell for your patient to receive treatment. People sell even their houses; they don't sell them for pleasure 30 16 20 23 24 30 Grief, guilt and worry in receiving care…”