Evaluation of an innovative Live Strong COVID-mitigating healthcare delivery for adults after starting dialysis in the Northern Territory: A qualitative study
Sara Zabeen, Anne-Marie Eades (Aboriginal and/or Torres Strait Islander), Onika Paolucci (Aboriginal and/or Torres Strait Islander), Richard Modderman, Clee Tonkin, Kerry Dole, Gwendoline Lowah (Aboriginal and/or Torres Strait Islander), Kirsty Annesley, Jacqueline Kent, Emidio Coccetti, Anne Weldon, Matthias Jing, Deborah Roe, Rebecca Jarman, Anne-Marie Puruntatameri (Aboriginal and/or Torres Strait Islander and Indigenous Patient Reference Group member), Edna May Wittkopp (Aboriginal and/or Torres Strait Islander and Indigenous Patient Reference Group member), Wayne Alum (Aboriginal and/or Torres Strait Islander and Indigenous Patient Reference Group member), Tolbert Dharromanba Gaykamangu (Aboriginal and/or Torres Strait Islander and Indigenous Patient Reference Group member), Jaquelyne T. Hughes (Aboriginal and/or Torres Strait Islander)
First Nations Health and Wellbeing – The Lowitja Journal, Volume 1, 2023, 100001. DOI: https://doi.org/10.1016/j.fnhli.2023.100001
During March 2021 to February 2022, within a local pandemic preparation and response phase in the Northern Territory (Australia), the New Start Dialysis Transition Programme (NSDTP) extended usual services by designing and implementing three activities aimed to support patients with kidney failure to Live Strong after starting dialysis: a) incorporation of COVID-safe education at group health education sessions, b) Frailty to Fit restorative physiotherapy and c) a COVID and culturally-safe, frailty-enabled transport service. This qualitative study evaluated these initiatives within the broader socio-environmental context.
The study was guided by an evolved Grounded Theory approach. Feedback was gained from 61 participants, involving Aboriginal and Torres Strait Islander people with lived experience of dialysis care, their family caregivers, health professionals and Indigenous Patient Reference Group members.
Multiple data sources and a related comprehensive thematic analysis generated six key themes: 1) COVID-safe education delivery enabled family learning, was culturally respectful and strengths-based; 2) physiotherapy was personalised and patients experienced enjoyment; and 3) the transport service accommodated frailty needs and supported COVID safety needs. Participants also reported that within the broader socio-environmental context Live Strong meant: 4) living with purpose and dignity; and 5) living for the family, culture and the Country. Thus, participants recommended that 6) health systems could enable patients to ‘Live Strong’ by providing cultural understanding and patient safety across all healthcare settings they used.
Participants confirmed acceptability and recommended sustainability of three innovative services. These were designed, delivered and incorporated within usual care during the local COVID pandemic preparation and response. Success was credited to service flexibility that prioritised patient needs, family-inclusive care, and empathetic and respectful staff who had good cultural understanding of kidney care and strong team collaboration. Participants also recommended health systems to support the transferability of those success attributes to other healthcare settings.
- The Live Strong project was invited, designed and implemented within the context of an anticipated high pandemic risk for patients within the Darwin, Northern Territory region. Aboriginal and Torres Strait Islander people were leaders of this work, as patient-users (and research participants), in clinical service provider roles and the Indigenous Patient Reference Group.
- The findings suggested that the study participants could identify ways that usually delivered Aboriginal and Torres Strait Islander-led healthcare evaluated within the Live Strong project helped patients to ‘Live Strong’.
- Participants’ feedback invited the successful elements of this Live Strong project—transport, physiotherapy and education—to be extended to other dialysis units they accessed.
Related Research Areas
- Key populations