The Stay Strong App as a Self-Management Tool for First Nations People with Chronic Kidney Disease: A Qualitative Study

doi:10.21203/rs.3.rs-968236/v1

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Research Article

The Stay Strong App as a Self-Management Tool for First Nations People with Chronic Kidney Disease: A Qualitative Study

https://doi.org/10.21203/rs.3.rs-968236/v1

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Background: The high burden of chronic kidney disease and its substantial impact on quality of life demands innovative patient care strategies. Improved outcomes are linked with patient centred interventions which address psychosocial as well as physical needs. Given the high incidence of kidney disease among First Nations people, culturally responsive approaches are also needed. The Stay Strong app is a holistic wellbeing tool designed with Northern Territory First Nations people. This study explores the suitability of the Stay Strong app as a patient-centred self-management tool as shown by the readiness of participants to engage in goal setting. Data were collected during a clinical trial which showed efficacy of the tool in improving wellbeing for people with both End Stage Kidney Disease and symptoms of distress and depression.

Methods: First Nations (i.e., Aboriginal and Torres Strait Islander) participants receiving haemodialysis in the Northern Territory (n = 156) entered a three-arm, waitlist, single-blind randomised controlled trial which provided collaborative goal setting using the Stay Strong app at baseline or at 3 months. Qualitative data gathered during delivery of the intervention were examined using both content and thematic analysis.

Results: Almost all participants (147, 94%) received a Stay Strong session: of these, 135 (92%) attended at least two sessions, and 83 (56%) set more than one wellbeing goal. Using a deductive approach to manifest content, 13 categories of goals were identified. The three most common were to: ‘connect with family or other people’, ‘go bush/be outdoors’ and ‘go home/be on country’. Analysis of latent content identified three themes throughout the goals: ‘social and emotional wellbeing’, ‘physical health’ and ‘cultural connection’.

Conclusion: This study provides evidence of the suitability of the Stay Strong app for use as a chronic condition self-management tool for First Nations people. Participants set goals that addressed physical as well as social and emotional wellbeing needs. The goal setting intervention aligns directly with self-management approaches that are holistic and prioritise individual empowerment. While biomedical models focus on the mechanics of illness, the findings share a strong message that healing also comes through family, country, and cultural identity. Implementation of self-management strategies into routine care remains a key challenge and further research is needed to establish drivers of success.

Urology & Nephrology

self-management

chronic kidney disease

Indigenous

wellbeing

first nations

Chronic kidney disease is one of the most important causes of increasing burden of disease globally (1). In Australia, people in remote and very remote areas such as the Northern Territory (NT) experience much higher rates of kidney disease (2, 3). The NT has the highest incidence and prevalence of chronic kidney disease requiring renal replacement therapy including haemodialysis, peritoneal dialysis or kidney transplantation (4). Furthermore, age adjusted prevalence for the NT Aboriginal population is up to 17 times that of the non-Aboriginal population (5, 6). The link between increasing disease burden and health expenditure highlights the need to explore new, more effective intervention strategies. For example, recent research has shown that surprisingly, the cost of relocating people to urban areas for dialysis may be greater than the cost of remote service delivery (7). The need for new approaches is also driven by the high societal cost and impact on patient quality of life (8). Patient centred care approaches (9), self-management support (10), use of patient navigators (11) and peer led support (12) are among a range of strategies outside of direct patient care that seek to address quality of life of chronically ill patients and the concurrent demand for services.

Patient-centred care and self-management approaches have been identified as having significant potential to result in positive impact for patients with chronic diseases (13). Patient-centred care is attentive to patients’ psychosocial as well as physical needs and encourages shared control of the consultation, intervention decisions and management of health issues(13). Based on the Chronic Care Model, self-management is defined as ‘the degree to which a patient with a chronic condition is able and willing to control his or her daily life.’ Models of self-management in practice vary widely from provider-set goals to individual empowerment in goal setting, from a biomedical to a holistic focus, and from individual to group to system-wide interventions (14, 15). Common elements of current models include increased patient participation in care, collaborative goal-setting, and planning of treatment (16). Self-management proponents recognise that many decisions are made by patients in their day to day lives, away from both the scrutiny and the support of health care providers. These decisions influence their illness trajectory and are impacted by self-management skills. In this sphere of day to day challenges and solutions, the patient is the expert (17).

There is increasing evidence for improved outcomes across physical health conditions and depressive illness in response to self-management strategies (13, 18). However, challenges to implementation of self-management have been reported (19, 20). These include wide variation in the nature of strategies (21), and uncertainty around preferred outcome measurement (23). Boger and Ellis et al reported that preferred outcomes ranged across stakeholders from knowledge, skills, and bio-psychosocial markers of health, through to ‘being me’ and having positive social networks (22). Further challenges are posed by attempts to implement collaborative goal setting—a key factor in fostering self-management. For example, service providers’ need to shape participants' goals into pre-determined health behaviour change often takes priority over the empowering and motivating process of collaboration with service users (22). Furthermore, there is little evidence of acceptability and feasibility of self-management approaches within First Nations communities.

In Northern Australia, there is a pressing need for interventions that are culturally responsive to the priorities and values of First Nations people (23). First Nations people are overrepresented among those with chronic conditions in the population and most speak their own language at home (24, 25). In contrast, the majority of health professionals they will meet on their health journey are non-Indigenous and communicate in English (26).

Requirements for holistic, culturally responsive care in CKD have been understood and expressed through services such as ‘Purple House’ in Alice Springs (the Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation), which developed a model of care based around ‘family, country and compassion’. Along with offering dialysis, aged care and disability support services, Purple House offers support for accommodation and financial relief, transport to attend appointments, return to country visits, and social activities such as bush picnics and visits (27). Nevertheless, gaps persist in chronic conditions care in the NT with recommendations for change including: more patient health education, broadening of health care provider perspectives (e.g. to a holistic approach), strengthening links with the community (e.g. supporting return for cultural ceremony), and adapting the service environment (e.g. to be more family friendly) (28). What is not known is whether individualised, culturally responsive self-management interventions can assist in filling such gaps.

The Aboriginal and Islander Mental Health Initiative (AIMhi) Stay Strong intervention addresses psychosocial as well as physical needs consistent with a model of patient-centred care that empowers participants to engage in self-management of these needs. It was co- designed with First Nations People to overcome cultural and language differences (29, 30). In accord with the principles of trauma-informed care (31), it incorporates a strengths-based approach to collaborative goal setting. Stay Strong has undergone consultation, codesign and implementation cycles over a decade, with gathering evidence of acceptability, feasibility and efficacy (32-34). Following translation to digital format (the Stay Strong app), it was adapted and successfully tested with 156 First Nations people in the ‘Wellbeing Intervention for Chronic Kidney Disease (WICKD)’ clinical trial (35). The trial aimed to determine whether the AIMhi Stay Strong app improved mental health and wellbeing for First Nations people receiving haemodialysis. Published results show significant improvement in wellbeing for participants with symptoms of depression and emotional distress at baseline (36). Participants’ responses to the intervention that were gathered in the course of the trial, however, have not yet been published.

This study recognises that the effects of complex interventions are difficult to explore using quantitative methods alone (37) and examines qualitative data collected in the Stay Strong app through the course of the WICKD trial. While the trial also showed that an app that delivered a brief, culturally-responsive health education session about Hepatitis B (the Hep B app) also improved distress and depression symptoms, that app does not collect qualitative data or support participants to set collaborative goals, and so is not included in this analysis.

This study had two objectives:

To explore the suitability of the Stay Strong app as a self-management tool in End Stage Kidney Disease as shown by the readiness of participants to engage in goal setting.

To give voice to participants priorities and values as revealed through their self-management goals.

Participants and setting

This study examined qualitative data collected within the Stay Strong app through the WICKD clinical trial (ACTRN12617000249358). The trial methods have been detailed elsewhere and are summarised here for context (38).

This three-arm, waitlist, single-blind randomised controlled trial tested the efficacy of the Stay Strong App intervention in improving wellbeing among First Nations people undergoing haemodialysis for ESKD in Alice Springs and Darwin. Participants were randomised to three treatment conditions. One condition (‘immediate treatment’) received the AIMhi Stay Strong app at baseline and at three months, and the other two conditions (‘contact control/delayed treatment’ and ‘usual care/delayed treatment’) received the app at 3 months. Outcome measures were completed at baseline, 3 months and 6 months (36). Participants were reimbursed for their time with a supermarket voucher at each follow up point. In addition to their allocated treatment, all participants received usual care from their renal service.

Participants were Aboriginal and Torres Strait Islander Australians aged ≥18 years, receiving maintenance haemodialysis in Alice Springs or Darwin for more than 6 months. Exclusion criteria were an age <18 years, having visual impairment, a current a guardianship order or being otherwise unable to provide informed consent. Participants were recruited into the study whilst attending their usual dialysis care services. Given that they had received dialysis for at least 6 months, it could be anticipated that the initial impact of this life change had settled to some extent. Participants were nevertheless likely to be active in attempting to identify new self-management strategies given the desire to maintain their health and to prepare for a renal transplant (39). However, many were also likely to have a range of mental or physical health issues including low energy.

As expected, baseline symptoms of depression and distress were common, with 45% (70/156) of participants scoring in the moderate/severe range on the chosen depression screening tool, the Patient Health Questionnaire-9 (i.e. > = 10) and 39% (61/156) scoring in the moderate/severe range on the chosen emotional distress scale, the Kessler 10 (i.e. > = 25) (36). Consistent with the high mortality and morbidity experienced amongst the dialysis population, nine participants died during the study for reasons unrelated to the trial, and two were withdrawn due to being too ill to participate.

Consent, ethics and funding

Approvals were granted by the Central Australian Human Research Ethics Committee (CAHREC No: HREC-16-406) and the Human Research Ethics Committee (HREC) for the NT Department of Health and Menzies School of Health Research (HREC-16-2599), including an Aboriginal subcommittee. Fully informed oral consent was obtained from all participants using pictorial information sheets and flipcharts in plain English with Aboriginal language versions available. Demographic information and outcome measures were collected using a tablet device including pictorial prompts and Aboriginal language recordings (choice of 11 NT languages). Interpreters were used where necessary. This study was supported by the National Health and Medical Research Council (NHMRC) project grant (GNT# 1098311).

Data collection

The intervention

The Stay Strong intervention was delivered by a team of 15 researchers based in Alice Springs and Darwin (13 female, 2male). Eight (53%) had clinical qualifications (occupational therapy, nursing, Aboriginal Health Worker, psychology and naturopathy), and eight (53%) were First Nations people. Following Stay Strong training, the intervention was delivered in teams of two (one non-indigenous and one First Nations researcher), consistent with the AIMhi Stay Strong Planning Brief Treatment Manual [22]. Reviews of app data and ongoing booster training sessions provided feedback to these researchers, allowing adjustment to their mode of delivery as needed [17]. The researchers were not involved in participant treatment and most had not met the participants prior to recruitment to the trial. The interviews were usually held in dialysis waiting areas or homes or hostels, while for a few the intervention was delivered during dialysis.

The Stay Strong app brief intervention, designed to be delivered as a 20-minute session, embodies key elements of a face-to-face semi-structured interview. It incorporates a series of prompt points: family (who supports you?), strengths (what keeps you well?), worries (what takes your strength away?), and strategies for change goals/needs (what goal for change would you like to make and why would that be a good change?).

Each of the prompt points is supported by colourful representative images with twelve choices each for strengths and worries organised under four categories, with the option to add others as desired (Table 1). The chosen prompts, text and images were codesigned with First Nations people and adapted with First Nations and non-Indigenous renal service providers prior to the trial (35). At each step of the session, responses were entered concurrently, allowing the participant to guide the input of their data during the session. Motivation was enhanced through direct comparison between strengths and worries. This promoted discrepancy, a key element of motivational interviewing (40).

Table 1

Stay Strong app prompts prior to goal setting
Things that keep me strong
Spiritual and cultural	Physical	Family, social, work	Mental and emotional
Cultural Identity	Health centre	Work or jobs	Understanding health
Connection to culture and country	Healthy food	Teach kids	Music and dance
Obligation	Exercise	Family and friends	Think strong way
Other	Other	other	Other
My worries
Spiritual and cultural	Physical	Family, social, work	Mental and emotional
Cultural identity	Being sick	Family worry	Too worried or sad
Missing cultural and country	Unhealthy lifestyle	Gambling	Mixed up thoughts
Obligation	Gunja, grog, smokes	Anger or violence	Hearing voices
Other	Other	Other	Suicide and self-harm

The interview was designed to assist in establishment of rapport through sitting side-by-side to view the shared screen, thus avoiding direct eye contact if preferred. A further design element to strengthen therapeutic alliance was the discussion of relationship and strengths prior to exploration of concerns. In addition, the training emphasised that direct questions can be experienced as challenging. Instead, practitioners were encouraged to show the relevant images and simply ask, for example ‘Are any of these worries for you?’.

The training also taught the importance of setting goals which were specific, measurable, accessible, relevant and timely (SMART), in line with recommendations in the literature (41, 42). It highlighted that to maximise motivation the participant was to choose their own goals, while the role of the researcher/therapist was to facilitate their decision making rather than to mould it. The app supported successful goal setting through exploring steps to the goal, covering what would be done, when it would be done and who might support that step. A maximum of two goals was encouraged during each session. At goals review, feedback about progress was given and previous goals might be kept, revised, or replaced. The session concluded with development of a pictorial summary which was reviewed prior to completion. The summary was then printed and delivered to the participant. The review of the plan and delivery of the personal summary was designed to enhance motivation, whilst also allowing participants to review their inputted information.

The delivery of the treatment in the WICKD trial involved an interview of approximately 20 mins using the AIMhi Stay Strong app, with a second session of the same length within 2-4 weeks that was also guided by the app. Session 1 explored family, strengths, worries and goal setting. Session 2 reviewed information entered previously, refined the goals and addressed any barriers to goal attainment, setting new goals as appropriate. Participants received a text message or phone call one week following the initial treatment reminding them of their goals and steps for making changes.

Data analysis

Qualitative data from app sessions were analysed using a combined content analysis and thematic analysis approach, guided by Graneheim and Ludman (43). The initial identified unit of analysis was each individual response to the goal setting section of the interview. This section explored goals for change and reasons for making that change. These responses were recorded in the app and later uploaded to the study data base. Prior to analysis the data set was reviewed, and goals that were repeated in later sessions were removed so that each goal was only included once. Using a deductive approach to manifest content, 13 categories were identified, and their frequency was counted (Figure 1). In a subsequent step, an inductive approach allowed identification of broader themes. Categories and themes were first discussed between the Senior Cultural consultant (PJM) and TN (psychiatrist and senior principal research fellow) and were then checked with research colleagues (MS and KD) until consensus was reached. Opportunity for participant checking occurred during the session, at the review of the app summary at the end of the session, and at the time of sharing the printed summary from the session.

Demographics

Sixty-two participants were allocated to the immediate treatment condition, 61 to the contact control/delayed treatment condition, and 33 to the treatment as usual/delayed treatment condition. Thus, all participants had an opportunity to receive the Stay Strong intervention at some stage. Data collection occurred between February 2017 and March 2019. Most participants were female with a mean age of 55 years, had been on dialysis for more than three years, and did not speak English as their first language (Table 2).

Table 2

Participant demographics
Gender Male Female	N (%)	44 (28%)
Gender Male Female	N (%)	112 (72%)
Age (in years) at randomisation	Mean (SD)	55 (9.4)
Years since initiation of dialysis	Median [IQR]	3.1 [2.0–5.7]
English as 1st language	N (%)	28 (18%)
Top End	N (%)	78 (50%)
Central Australia	N (%)	78 (50%)

Interventions received

Of the 156 participants recruited to the study, 147 (94%) participated in Stay Strong sessions. Those who did not receive a session were too tired, too unwell, had moved away or had passed away. Of the 147 participants who received a Stay Strong session, 12 (8%) received only one session, 80 (54%) received two sessions, 14 (10%) received three and 41 (28%) received 4 sessions. Most sessions were delivered as planned at each time point, and the average length of a first session ranged from 22-24 minutes and average length of a second session ranged from 14 to 19 minutes (36).

Participant goals

In total, 262 separate goals, together with reasons for choosing that goal, were entered into the app. Most participants (83/147, 56%) set more than 1 goal: 56 (38%) chose two goals, 24 (16%) set three and 3 (2%) set more than three goals (M = 1.8). Many separate goals incorporated more than one type or category of goal, for example a goal to ‘connect with people’ often also included a goal to ‘go home’ or ‘to country’, and a goal to ‘exercise’ often included plans to ‘go hunting’. Exploration of goal data through content analysis resulted in 373 individual goals and 13 distinct but interlinked categories. The most frequent of these was to ‘connect with family or other people’ (Figure 1). The incorporation of more than one category into a goal is illustrated in the sample responses in Box 1.

Box 1. Sample responses from each participant goal category

Connect with family or other people

See more family from out of town to feel more connected and less disconnected from country

Keep credit on my phone so I can call my family and friends

Arrange women’s meeting regularly when not on dialysis days [so I can] have a yarn with other ladies, make craft, feel productive like in Broome WA

Get my Wi-Fi back on [so I can] talk to my family via Facebook, play games again

Go home be on country

Go back and see country [so I can] do fishing, camping, watching sea gulls, drinking tea, going hunting

Go back to community and eat good bush tucker [so I can] feel good and happy to be on country and see family

Go bush/be outdoors

Go hunting, get some bush tucker [so I can] sit down and listen to birds, get bush tucker, get out and cook bush potatoes

Go turtle hunting with family [to be] feeling good, happy when go with family

Lose weight/eat healthy food

Come to exercise group at dialysis or Danila Dilba [because its] good for body, losing weight, feel healthy, get out of house

Go dig for yams [because] bush tucker is good for body

Exercise/improve mobility

Be able to walk again with prosthetic leg to work my body again, to get healthy

Get more exercise [because it will] make me strong and healthy so can feel good about myself

Do craft /art/music/reading

Do some weaving, make mats, dilly bags [because its] connection with culture

Do shell painting with Tiwi Children [so I can] teach young one’s culture, feel good

Change accommodation

Find somewhere to live away from hospital, get outside [so I can] be happy, see more family

Move out of hostel [because] I’d feel safer and will be with family)

Have less physical discomfort

Get bush medicine [so I can] stop itching and feel more relaxed

Get eyes fixed-so I can see better, feel more independent

Attend ceremony/sorry business

Go home for funeral [so I can] pay respect, support family

Go to APY homelands for funeral [so I can] see family, pay respect, say goodbyes

Have a renal transplant

Stay healthy for transplant [so I can] go back home

Get a transplant to live a normal life and travel

Have less substance use worry

Think about quitting smoking for my kidneys and health

Stop drinking grog [to have] no more headache or stomach pain, better sleep, better walking

Have less gambling worry

Not use all my money in gambling so I can have some for shopping

*Bracketed additions represent prompts within the app

All participants who set goals completed the step setting component of the app, with the vast majority setting more than one step on at least one goal (133/147, 90%). Goals were linked with steps which were generally specific, measurable, accessible, relevant and timely, as prompted within the app and as demonstrated in Box 2 below

Box 2. Examples of goals with addition of the steps chosen*

[I want to] lose some weight for transplant [because it] helps for dialysis [so the first thing I will do is] buy boots on Wednesday [with help from] (person’s name) [and the second thing I will do is] start walking from home to gorge - 4 km [and another thing I will do is] talk to nurses about dietician

[I want to] do painting or make dilly bag [so I can be] less bored [so the first thing I will do is] get canvas and paint next week [and the second thing I will do is] ask mother in law to bring in pandanas [with help from] my husband this week

[I want to] help young people so young ones can care for old ones [so the first thing I will do is] bring them out bush regularly during school break [with help from] other women in community [and the second thing I will do is] teach them how to care for themselves [and another thing I will do is] teach them songs and drumming

*Bracketed additions represent prompts within the app

Further examination of latent content within the qualitative data identified three broad themes: ‘physical health’, ‘cultural connection’ and ‘social and emotional wellbeing’ (SEWB) (Figure 2) Examples of goals which demonstrate these themes are given in Box 3.

Box 3. Examples: physical health, cultural connection, social and emotional wellbeing themes

Physical health

Want to do renal training to do selfcare [so I can] get back home and family happy for me

Attend last dentist appointments [so I can] finally be on transplant list

Social and emotional wellbeing

Talk with friends share stories and food [because it] makes me happy

Find somewhere to live away from hospital, get outside [so I can] be happy, see more family

Cultural connection

Talk to family about country not drinking grog [because it’s] good to talk about country and tell stories and sharing of dreamtime with kids. My grandfather did this in Nyrripi [NT community in Central Desert Region]

Go to APY homelands for funeral [so I can] see family, pay respect, say goodbyes

Despite physical illness, low mood, and high distress, dialysis participants engaged actively in this self-management intervention. The vast majority chose to attend follow up sessions, most chose more than one goal, and most chose more than one step to that goal. The goals chosen aligned with the holistic view of health of First Nations peoples documented elsewhere, with connection to culture, land and family interwoven throughout (29, 44). The top three categories were: ‘connection with friends or family’, ‘going home/being on country’ and ‘going bush/being outdoors’. Social connection was chosen more than twice as often as other goals. This need for social contact and family connection, and preference for treatment at home or visits home (often to their remote community) for ESKD participants is well aligned with established evidence of the sense of isolation and displacement from family, country, and identity caused by relocation for dialysis (45).

The engagement and alignment of goals with recognized values suggests acceptability and suitability of the intervention in this setting. This suggestion is strengthened by the findings of the clinical trial that those with high distress or depression scores at baseline showed clinically significant improvement at 3 and 6 months follow up (36). On the other hand, the clinical trial showed no impact on dialysis attendance (36). This result accords with systematic review findings of limited and inconsistent impact of self-management on medical outcomes, while mental illness is among the conditions with best evidence of effectiveness (46). The findings affirm the importance of the holistic models of care offered through services such as Purple House (‘family, country and compassion’), and the significance of continuing to promote mobile dialysis services and dialysis clinics on country (28, 44). They also suggest that shaping the goal setting of clients to ensure physical health needs are addressed by service providers is unwarranted (22), since participants were clearly aware of their own physical health needs. The need for a holistic approach to their needs was exemplified by their choice of self-management goals that interweaved physical health needs with social and cultural priorities. This finding is not surprising given that Indigenous peoples define wellbeing far more broadly than merely physical health, and that connections with land, language, family and identity are essential components of wellbeing (47). In addition, the findings highlight a range of simple interventions that CKD outpatient clinics and services working with similar client groups might prioritise, such as access to: phones, WIFI, radio, music, creative opportunities such as painting and weaving, fitness and mobility training, assistance with health care appointments and diarising, along with family-friendly welcoming environments as recommended in best practice guidelines (48).

The emphasis on sociocultural priorities in goal setting contrasted starkly with the relatively few goals chosen to directly address physical complaints (sleep, pain), substance use (alcohol smoking, and cannabis) or specific mental health issues, for example through counselling. On the other hand, the interdependent nature of all the categories is evident, with mobility, for example, strongly linked with outdoor activity and going to country, as well as to physical health and social and emotional wellbeing. Although not directly addressed, it is therefore likely that these issues were indirectly addressed through other goals. The relatively few participants who chose a goal specific to mental health or counselling might be interpreted in different ways. In terms of the interdependence of the categories it is likely that social and emotional wellbeing needs are perceived to be met by activities such as social and cultural connection. On the other hand, it might be explained by lower rates of trust in doctors and hospitals by Aboriginal and Torres Strait Islander people with a mental health condition (49), or by low accessibility of culturally appropriate mental health services (50). Whichever of these possible reasons is paramount, the need for SEWB intervention is clear given the high comorbidity of CKD with distress and depression (51).

Integrating SEWB and chronic disease treatment is an important strategy in this cohort where physical illness and disability combine with limited access to transportation (52). The findings of this study support suitability of this tool as a combined chronic condition self-management and social and emotional wellbeing intervention. Additionally, it gives voice to the individual needs of consumers, allowing services to review and adapt their processes in the light of identified consumer priorities.

One limitation of this study is that the data included multiple sessions for some individuals and single sessions for others. Thus, some individuals are overrepresented compared with others. While repeated goals were not included multiple times, multiple sessions per participant were included to inform the range of goals that participants set. Another potential limitation is that researchers may have coached participants in their goal setting despite the protocols and training in place to seek to avoid this approach. The findings, however, show goals that align well with findings from similar work in the field, suggesting that any such bias was not systematic (28, 29). Another limitation to consider is that the description of the goals is relatively ‘thin’, with little detail providing context of the full interview. However, each of the goals were determined following therapeutic engagement in a four-step process exploring important family and friends, strengths and worries, prior to goal setting. Further, while brief in words, many of the goals evoke visual pictures bringing relationships, places and interactions to life in accord with definitions of thick description (53). The original development of the tool in the Northern Territory, and its recent adaption to the local renal setting, may limit its transferability to other regions of Australia, or to use with Indigenous people in other countries.

In conclusion, this study demonstrates that the Stay Strong app can be considered for use as a chronic condition self-management tool for First Nations people. This result is important as there are few, if any, culturally responsive self-management support tools currently available. The findings confirm that while biomedical models must focus on the mechanics of illness, First Nations people also prioritise social connection, family, country, and cultural identity. Systematic implementation of self-management strategies into routine care remains a key challenge and further research is needed to establish drivers of success.

Ethics approval and consent to participate

This study was performed in accordance with the Declaration of Helsinki and approved by the Central Australian Human Research Ethics Committee (CAHREC No: HREC-16-406) and the Human Research Ethics Committee (HREC) for the NT Department of Health and Menzies School of Health Research (HREC-16-2599), including an Aboriginal subcommittee. Fully informed verbal consent was obtained from all participants using pictorial information sheets and flipcharts in plain English with Aboriginal language versions available. Verbal consent to participate was used rather than written consent and this was specifically approved by both CAHREC and the HREC for the NT Department of Health and Menzies School of Health Research. Our target population is Indigenous people. Our previous studies suggested that some Indigenous people with low literacy find written forms of communication a disempowering experience. We sought individual verbal consent from each participant after detailed discussion about the purpose, methods and demands, risks and potential benefits of the study (as outlined in the information sheet). We asked the participants if they understood the information provided and if they consented to participation. Their response was recorded in the assessment app by ticking a check box. Participant’s willingness to complete the assessment scales and intervention session were further confirmation of their consent to participate.

Consent for publication

Not applicable

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due to participant confidentiality but may be available from the corresponding author on reasonable request.

Competing interests

The authors have no competing interests.

Funding

This project was supported by a National Health and Medical Research Council (NHMRC) project grant (GNT# 1098311). JH was supported by NHMRC Fellowship (GNT# 1092576). The funding source had no input into the design of the study or the preparation of this manuscript and the views expressed in this publication are those of the authors and do not reflect the views of NHMRC.

Authors’ contributions

TN was a major contributor to the conception and design of the study, data interpretation and presentation and drafted the manuscript text. KD was a major contributor to the conception and design of the study, data interpretation and presentation and assisted with writing and reviewing the manuscript. MS was a major contributor to the conception and design of the study, conducted data collection and assisted with data analysis and interpretation and writing and reviewing the manuscript. DK and AC were major contributors to the conception and design of the study and assisted with writing and reviewing the manuscript. SWM and CS contributed to the design of the study and reviewed the manuscript. All authors read and approved the final manuscript.

Acknowledgements

Authors would like to thank all the staff and patients at NT Renal Services and Western Desert Nganampa Walytja Palyantjaku Tjutaku in Darwin and Alice Springs, Australia for their assistance with this study

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No competing interests reported.

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You are reading this latest preprint version

The Stay Strong App as a Self-Management Tool for First Nations People with Chronic Kidney Disease: A Qualitative Study

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Version 1

Abstract

Figures

Background

Methods

Data analysis

Results

Demographics

Interventions received

Participant goals

Connect with family or other people

Go home be on country

Go bush/be outdoors

Lose weight/eat healthy food

Exercise/improve mobility

Do craft /art/music/reading

Change accommodation

Have less physical discomfort

Attend ceremony/sorry business

Have a renal transplant

Have less substance use worry

Have less gambling worry

Physical health

Social and emotional wellbeing

Cultural connection

Discussion

Limitations

Conclusions

Declarations

Ethics approval and consent to participate

Consent for publication

Availability of data and materials

Competing interests

Funding

Authors’ contributions

Acknowledgements

References

Additional Declarations

Status:

Version 1