Collaborative Codesign: Unveiling Concerns and Crafting Solutions for Healthcare with Health Professionals, Carers and Consumers with Chronic Kidney Disease

Abstract

Background: Strategies are needed to address the elevated prevalence of chronic kidney disease (CKD) in socioeconomically disadvantaged regions where obesity, smoking, and type 2 diabetes rates are high. Methods: Recognising the inadequacy of generic health approaches in complex contexts, this study employed a participatory action research (PAR) framework to design and deliver five co-design community workshops in two stages over one year. Stage one workshops identified key matters of concern and stage two focussed on problem solving and co-creating solutions. The goal was to inform health service delivery in a region with high CKD prevalence and explore strategies to overcome barriers to individualised, collaborative care, and promote self-management. Results: The workshops identified three themes: 1. achieving person/family-centred care; 2. multimorbidity and siloed care (stage one); and 3. a kidney wellness framework (stage two). Conclusions: The findings reinforce the need for enhanced care coordination, and highlight the importance of consistent information sources, clear referral pathways, and centralised data sharing among health professionals. The proposed kidney healthcare framework aims to support various professionals, fostering linkages between primary and tertiary care, with an emphasis on professional development, especially in communicating complex information to individuals with multimorbidities. While co-designed healthcare models show promise, challenges persist in effective self-management amidst complex disease information and multimorbidity.

1. Introduction

Chronic kidney disease (CKD) is a complex multifactorial disease and is accompanied by a major personal, as well as financial burden, whereby psychosocial, economic, and cultural factors impact disease progression [1,2,3,4,5]. The global prevalence of CKD has been estimated at approximately 10% [6]. While ranked as the 17th leading cause of death in 1990, CKD increased to the 12th leading cause of death in 2017 [6]. Common causes include diabetes, hypertension, obesity, and glomerulonephritis, while CKD is a risk factor for cardiovascular heart disease, stroke, peripheral vascular disease, and gout [6,7].

Health professionals have described the benefits of collaborative care between GPs, allied health practitioners, and nurse-led programmes [3,8]. These benefits include improved communication between health professionals, clarity among primary care practitioners around guidelines, improved referral to specialist care and more time available for individualised education [3]. Primary care intervention via comprehensive screening and early detection utilising collaborative care models has been shown to improve self-management, delay CKD progression, lower all-cause mortality, lower risk of initiating dialysis, and lower risk of hospitalisation [9,10,11,12].

Impediments to the implementation of collaborative care can include provider-related barriers such as confusion regarding clinical guidelines, inadequate financial reimbursement for screening, and lack of supportive primary care technology such as software not automatically flagging abnormal results [8,13]. Other barriers to optimal care for people with CKD are also related to untimely access to care, multimorbidity [14], fragmented advice from multiple health professionals [15], socioeconomic disadvantage [16], and low health literacy [17].

In Australia, CKD prevalence is higher in geographic areas of greater socioeconomic disadvantage, and that have higher rates of obesity, smoking, and type 2 diabetes [18]. In regions with complex health profiles related to socioeconomic disadvantage, health initiatives designed with minimal input from target end users are not truly personalised or adaptive to specific and evolving needs [19]. The geographic region of investigation in the present study, the Illawarra Shoalhaven region in New South Wales, has greater socioeconomic disadvantage and a reported CKD prevalence of 9% [20]. We argue, therefore, that it is essential to explore the lived experiences of health practitioners, carers, and individuals living with CKD to inform kidney health care services and assist in improving health outcomes in regions where prevalence is high. A co-design approach was undertaken, involving co-design community workshops to engage with consumers, including people living with CKD, their families/carers, and health professionals. Co-design is an approach that can result in enhanced service delivery, improved customer satisfaction, and improved health outcomes, such as mortality, glycaemic control, and self-care [2,21,22,23].

The purpose of this research was to evaluate experiential data collected in a region of high socioeconomic disadvantage with a range of consumers that have lived experience with CKD. The primary aim was to co-design feasible solutions to matters of concern, with potential to improve kidney-related health outcomes in the longer term. The findings from this research will inform health service delivery improvements aimed at overcoming the impediments to individualised, collaborative care, ultimately enhancing self-management among people living with CKD.

2. Materials and Methods

2.1. Aim, Setting, and Study Design

The primary aim was to co-design feasible solutions to matters of concern with good potential to improve kidney-related health outcomes. This qualitative study was reported in accordance with the COREQ checklist [24]. Purposive sampling was used to recruit individuals and their carers living with CKD and health professionals, working in the primary and tertiary sectors in a regional area of New South Wales, Australia.

2.2. Participants

Community participants were recruited utilising purposive sampling via flyers and posters distributed in tertiary and primary care practices, including nephrology clinics and primary care services, as well as via an advertisement in a local newspaper. Email invitations were sent directly to health practitioners, their practices, and representative organisations. Practice managers informed primary care staff of the study and notified the research team if any staff members were interested in being interviewed, after which direct contact was established. These practices were located in metropolitan, regional, and rural areas of the health district to capture a diversity of perspectives regarding service provision. Information was also disseminated in person and via flyer at three tertiary care kidney clinics by allied health, nursing and medical staff. People with any stage of CKD were eligible to participate. Targeted recruitment by specialist kidney nurses was also utilised to identify younger people (aged 18–40 years) and their carers who may not attend clinics regularly, with mail outs sent directly to these individuals.

2.3. Ethics Approval

The research was formally approved by the institutional Human Research Ethics Committee (HE2018/348, approval date: 13 September 2018). All participants provided written informed consent and to preserve confidentiality of health professionals, all reporting is confined to type of profession only.

2.4. Data Collection

This qualitative study was embedded within a participatory action research (PAR) framework. PAR comprises multiple methods of research involving iterative processes of planning, action, observing and reflecting [25]. The participative and collaborative nature of PAR reflects the aims of this study well [26]. Five co-design community workshops were held between September 2018 and August 2019. Co-design is a collaborative knowledge sharing and knowledge creation process where participants with varied skills and experiences are brought together to co-create solutions [27,28]. The workshops were not recorded in order to encourage uninhibited conversation and authentic information sharing. Consequently, quotes included in this manuscript are not allocated to individual participants but are identified as either originating from the health professional participants or from those that were living with or caring for an individual living with CKD (

Table 1. Characteristics of individuals who attended the co-design workshops.

Co-Designer Characteristic
Profession	Co-Design Community Workshop 1: Current State (n)	Co-Design Community Workshop 2: Future State (n)
Individuals with CKD	23	10
Carers	8	2
Kidney Care Nurses	9	9
Nephrologist	0	1
Dietitian	3	2
Social Worker	3	1
Totals	46	25

). The research was conducted in two stages. Stage one workshops (n = 3) collected experiential data aimed at identifying current matters of concern, and are herein referred to as current-state workshops. Stage two workshops (n = 2) utilised the findings from the stage one workshops to stimulate ideation and problem solving, and are herein referred to as future-state workshops. Many of the participants from the current state workshops attended the future state workshops, although there were three participants (one individual living with CKD and two health professionals) in the stage two workshops that had not participated in the co-design study before.

2.4.1. Stage 1: Current-State Workshop Process

Workshop participants were divided into groups of 5–6 people, with health professionals working together, and individuals and carers living with CKD working together. Each group included a facilitator from the research team. The first activity involved briefly writing individual stories with questions as prompts in the template (Figure 1). Following this, the stories were communicated in a general discussion, the purpose of which was to build rapport and trust between members of the group through shared experiences. The facilitators would then begin to collect data via transcribing key words and quotes on sticky notes as participants continued to have deep authentic conversations about their own journey of living or caring for people with the disease.

2.4.2. Stage Two: Future-State Workshop Process

The current-state workshop findings were utilised to develop key matters of concern and personas which were used as research tools in the future-state workshops. As with the current state workshops, participants were divided into groups of 5–6 people, with health professionals working together and individuals and carers living with CKD working together. Each group included a facilitator from the research team and were given two or three personas to read and discuss embedded within one or two key matters of concern. Personas represent a user journey in a system, in the current context, individuals living with or caring for someone with CKD within the healthcare system. The use of personas in the future state workshops was adapted from [26,27], where story-telling can be utilised as a tool to facilitate the alignment of discussion within and between stakeholders. Each persona embeds traits and experiences common to individuals, carers, or health practitioners. The process of presenting participants with personas stimulated the sharing of stories and the generation of ideas in the context of pain points and possibilities around the management of CKD. The facilitator scribed onto a large piece of paper in the middle of the table, the opinions, attitudes, and ideas generated in the group discussion which was stimulated by the reading of the personas. A rigorous and authentic discussion around the significant common matters of concern that emerged from the data collected in the current state workshops was crucial to build rapport and stimulate ideas. After one hour and a collective break, the participants were invited to discuss, and problem solve. The groups were then given templates which contained “problem prompts” summarising the key findings from the current-state workshops (Figure 2;

Table 2. Summary of the key matters of concern identified in the current state workshops which were included as “problem prompts” for ideation of solutions in the future state workshops.

Invisible aspects of the disease present challenges. We don’t always look sick and sometimes it is difficult to obtain appropriate support. Silent symptoms of chronic kidney disease make the disease easy to ignore and so it is easy not to engage in early intervention measures.

We need the health system to care for the whole person not just the disease. We don’t have access to all the supports needed such as emotional and mental health support, financial support, translation, and multi-language supports and peer support.

With multiple conditions, we want health professionals to coordinate and collaborate across specialities. Multiple diagnoses can cause confusion about how different treatments impact different conditions—particularly relating to medication and nutrition. Specialists and care teams could work together better to share information. We are always feeling like we are continually retelling our story.

Health professionals identify an increase in young patients with chronic kidney disease. Young people have different needs and attitudes to the disease that are still being understood. Want to find better ways to engage young people in early intervention measures. Younger people particularly need to talk to others with experience of chronic kidney disease.

). Each group worked collaboratively to develop possible solutions that might address the issues identified.

2.5. Data Analysis

Analysis of the workshop data was conducted with two groups of research teams working together in person over the course of two days, for both the analysis of data collected during stage one (current state) and stage two (future state) workshops. The analysis of data collected from stage one and stage two consisted of several readings by the research team to gain familiarity and inform in-depth discussions, and then commencement of inductive thematic mapping. The latter was used to visualise patterns amongst the recorded data, to generate initial codes and then inform an iterative process of theme development [29,30]. Researchers returned to the data and tested themes for authenticity and consistency, then presented themes to all members of the research team to test for the same. The analysis was driven by the study objectives, and therefore did not require any high-level abstraction, and themes remained categorical as opposed to conceptual [30,31,32] The findings from the stage one (current state) analysis enabled the characterisation of the most significant matters of concern, and these were circulated among the participants in one-on-one discussions with researchers. During these meetings, participants ratified the findings and provided additional feedback, as deemed necessary. The current state workshop findings informed the key matters of concern and the development of the personas which were utilised as research tools in the future state workshops.

3. Results

3.1. Participants

The co-design approach involved participants with diverse skills and experiences identifying key matters of concern and co-creating feasible solutions addressing concerns and enhancing kidney-related health outcomes. Participants at the workshops included 33 people living with or caring for someone with CKD, tertiary allied health workers, kidney care nurses and one nephrologist (Table 1).

Researchers articulated six significant matters of concern (Table 2) from the stage one (current state) analysis, in the context of individuals and carers living with CKD, and three significant matters of concern, in the context of delivering health care to individuals living with CKD. Personas represent a user journey in a system, and an example of a persona representing an individual living with CKD has been included (Figure 3). The key matters of concern and the personas were then utilised as research tools in the future state workshops as a tool to facilitate alignment of discussion within and between stakeholders.

3.2. Key Themes to Describe the Current and Future State of CKD in the Region

Three themes were apparent from the data, two of which centred around matters of concern identified in the current-state workshops: 1. achieving person/family-centred care and 2. multimorbidity and siloed care. The third theme emerged from the future-state workshops and concentrated on future possibilities to improve health outcomes for individuals living with CKD: 3. a Kidney wellness framework.

3.2.1. Achieving Person/Family-Centred Care

Shock and Denial at Diagnosis

Individuals living with CKD described how the initial diagnosis, or breaking of news, is often presented with little hope, and described being given a “doomsday prophecy” (individual and carer group, I&C) with their diagnosis. One participant described their experience of being informed by the doctor that “there will be 6 months until dialysis—do what you need to do in that time” (I&C). When being told about the disease for the first time, shock and denial were common and the consequent reactions were described as “scary and overwhelming” (I&C) with thoughts like “it can’t happen to me” (I&C).

There was consensus among individuals living with CKD that they wanted to be presented with all options, not just the worst-case scenario, when first diagnosed, and expressed a need for greater clarity about the disease and importantly, what they can do to slow its progression. Some participants commented that it was “not explained that kidney disease doesn’t go back” (I&C) and that there was often a “lack of information on how I can fix things” (I&C). Individuals and carers described how they wanted specific advice about “how to live a normal life with the disease” (I&C) and clear information about how the future might look for them.

There was a common goal among health professionals to understand CKD from the patient’s perspective and to provide high-quality individualised education. However, health professional participants explained that when individuals are “in denial, they don’t want to acknowledge that they are sick” (Health professional; HP) and this was identified by many health professionals, as a major barrier to effective communication and shared understanding. Consequently, there was consensus that “increased professional education” (HP) for “improved education and individual care plans that included a diversification of resources to cross all cultures and languages” (HP) in the early stages of CKD might contribute to improved health outcomes and slower disease progression. Some individuals and their carers living with CKD argued that health professionals should be checking to ensure the disease-relevant information is understood to achieve empowerment and the ability to participate in their own health journey. It was important for participants that health professionals were inclusive and engaged in “two-way conversations” (I&C) providing opportunity for questions and being reflective of tone and engagement. Further, individuals and carers living with CKD wanted centrality in the decision-making process, for doctors to “take the time to explain concepts clearly” (I&C) at diagnosis and to have “more time with health professionals in the early days of diagnosis” (I&C).

The majority of individuals living with CKD and their carers agreed on the need to ensure that all people affected by the disease are informed and educated to facilitate support “for the family and carers in the community” (I&C). Having a carer present for support and to help interpret all the necessary information was viewed by the majority as vital. Carers reported that they found it “hard not having the answers for loved ones” (I&C). Carers explained that individuals living with CKD sometimes act differently at home compared to when they are in front of the doctor, sometimes they described a desire to ‘keep the doctor happy’ (I&C).

The general practitioner (GP) was described as “the gatekeeper of information” (I&C) for individuals with CKD in the early stages, who are not on dialysis, or within the kidney care unit. Early GP referral to kidney specialists was considered essential, and health professionals commented that referrals are “often too late for prevention techniques” (HP). Multidisciplinary teams were not involved in the management of care for individuals in the early stages of CKD and many health professional participants considered that an increased inclusion of MDTs in early-stage disease would result in improved health outcomes, stating that “together we can do a lot” (HP). There was majority consensus among health professional participants that the current structure of primary care consultations could not adequately compensate for the lack of “allied health, psychological services and education for patients in the early stages” (HP). The majority of individuals and carers living with CKD concurred with this viewpoint, explaining that “time was too limiting” (I&C) in a primary care consultation to discuss information deeply, in a safe, supportive environment and sometimes information needs to be repeated “two or three times to truly hear and understand” (I&C). There was also a majority consensus that CKD is “poorly understood within the community” (HP) and that GP practices could be better equipped to support individuals and carers early in the CKD journey to ensure “improved education prior to becoming unwell” (HP). A lack of resources and support in the early stages of disease was seen to be compounded by inequitable funding of chronic diseases in the primary care setting where “if individuals are captured by a diagnosis of diabetes, they will have better access to services” (HP).

Individuals living with CKD in the later stages of disease that had experience accessing tertiary care often described how they felt supported and heard by their local kidney care unit staff. Some referred to their local kidney care service “as family” (I&C) and a place where they “feel very loved and cared for” (I&C). The kidney care unit was noted as a great source of information, providing courses, expertise, and a sense of community. The unit provided “support for us to help take in the information” and was able to “take the sting out of the situation”. Having health professionals that listen was of high importance to individuals and carers living with CKD. One health professional explained that they always begin a consultation with “you are the most important person to me right now.” (HP). Indeed, specialist staff were described as having a “high level of dedication to looking after patients” (I&C). Kidney care staff described feeling happy and committed to delivering good evidence-based care and that having a low staff turnover and “great senior nursing resources” (HP) all “equals excellent care” (HP). Nephrologists visiting communities were seen to enable the same level of care between units, while multidisciplinary teams were viewed as a progressive step towards good health outcomes and “positive way forward” (HP). Multidisciplinary teams were noted to have a more prominent role in the care of individuals who are associated with the kidney care unit and in the latter stages of the disease and so these people consequently receive more individualised education, increased referrals for allied health care and more management discussions than those in community care.

3.2.2. A Desire for Collaborative and Coordinated Health Services

Siloed Care

The care provided by the kidney care unit was viewed as “excellent”; however, health professionals were recognised as time poor with a “super heavy workload with no backfill or additional resources” (HP) and consequently unable to provide all the services and supports that are needed and desired. Comorbidities contributed to the complexity of the journey and one health professional commented that “we continue to treat as if patients are not multimorbid, but they are!” (HP). Individuals and carers living with multiple diagnosis expressed confusion about how different treatments affect different conditions, particularly relating to medication and nutrition. Diet was one common area that individuals and carers living with CKD reported as difficult to navigate. Diets for kidney disease were perceived to be complicated, but even more so if other chronic diseases, such as diabetes, were present. Frustration was expressed regarding the advice provided by dietitians in different specialties (e.g., kidney disease and diabetes) and participants felt that advice was siloed: they “don’t talk to each other” to provide “a tailored diet for us as a whole person” (I&C).

Individuals with CKD described experiencing instances where there was often doubling up of blood tests and ultrasounds due to specialists not communicating with each other. It was also a frustration point for individuals and carers living with CKD if there was not good communication “between the GP and specialists (I&C) and “between specialists and MDTs” (HP). Further, jargon used by health professionals to describe the disease was often found to be “unfamiliar and hard to interpret” (I&C). Health professional participants acknowledged the overuse of medical terminology and jargon with patients and one participant described feeling “frustrated because these things are difficult to change” (HP). Individuals living with CKD reported that they often received conflicting information from different health professionals. Some reported that they had to do a lot of research themselves “to put all of the information together” (I&C). Learning about CKD came from many sources (Google, specialists, pharmacy handouts, etc.) and information was found to be conflicting, making it difficult to know which sources to trust (I&C).

Multimorbidity Warrants Coordinated Care

Multimorbidity was common among all participants. Individuals living with CKD and their carers described that they “want to be heard and respected for [their] experience and knowledge” (I&C). Repetition of a health history to different health professionals was tiresome, with one individual stating “I am starting to think I should carry a resume of my medical history” (I&C). Individuals described multiple admissions to hospital were common but that their opinions and lived experiences were not acknowledged by health professionals: “it’s like I’ve never been in this situation before when I have” (I&C). One participant perceived that experiencing compassion fatigue, highlighting it can make you “feel like a punching bag” (I&C).

Young people living with CKD have different needs and attitudes to disease that are still being understood. Young participants (n = 4 < 30 yrs) expressed frustration that they often were not taken seriously by health professionals and that their story had to be retold and explained repeatedly, commenting that “we have to convince people that there is a problem” (I&C). Access to disability support services in a timely manner was often challenging, but this was particularly evident for younger individuals who explained that applying for transportation and domestic assistance was often denied. The invisibility of the disease meant some patients “don’t often look sick” (I&C), which can create difficulties in the health care system, as well as when seeking opportunities for work and/or education.

Individuals and carers living with CKD also described that the complexity of medication management experiencing side effects can be depressing, leading to “tiredness and an unsettled mind” (I&C). These were perceived to add to the difficulty of “being able to stay focused” (I&C) to access education and support. Health professional participants described how in later stages of the disease, “the patient journey is made worse due to the heavy pill burden, lack of health literacy, too many appointments” (HP).

Barriers to Accessing Collaborative Coordinated Care

There was a lack of clarity around what services are available and how to access psychological/educational/social support in the non-dialysis stages of CKD, particularly for those not associated with tertiary care. There was a majority consensus that accessing disability services for domestic assistance was very difficult. It was explained that tenacity and resilience was required, which is “particularly difficult” (I&C) for people living with CKD.

Health professional participants commented that “cultural and personal biases can restrict access for patients” (HP) and concurred that access to community support services were problematic, with poor availability of services, lengthy wait times and complicated application processes all being identified as “barriers connecting patients with appropriate providers” (HP).

Individuals and carers described many things to battle, and how some days, they just wanted to give up. Some have had to cease working and so experienced stress and fear about how they will support themselves and their families. The complications and fear associated with chronic disease was described as very lonely and was compounded by distance for those living in regional areas who described feeling “so tired and frustrated with the travel” (I&C). Some individuals with CKD also described how depression is ‘a constant on/off’ and they often felt as though no one else understood their feelings: “during the night. I am the sum of my failures” (I&C). Another participant described themselves as “a ticking time bomb” (I&C).

3.2.3. Integrated Kidney Healthcare

The key solution, ideated and co-developed with 71 health professionals, carers and individuals living with CKD, was a collaborative health care model delivered within an integrated kidney healthcare framework. The framework envisaged was inclusive and interdisciplinary, encompassing nutritional, physiological, and psychosocial support, all of which embedded and interconnected (Figure 4). Participants in the study emphasised the importance of seamless care coordination for CKD. They highlighted the urgent need for consistent information, clear referral pathways, and centralised data sharing among health professionals. The development of resources within this framework would integrate high levels of community participation and direction so that information is “family centred and holistic not just dialysis talk” (HP). Consequently, initiatives and innovations would be directed towards individual goals and values rather than organisational goals and values to facilitate “regular assessment of goals” (I&C) and avoid complex conversations when “we are gravely unwell” (I&C). Such a community driven approach would inform culturally responsive, individualised kidney health and wellbeing messaging, adapted to variable health literacy that is “actionable and understandable and in a variety of formats” (I&C). The factors identified as crucial to reducing barriers to holistic, person-centred healthcare included streamlining health messaging, dissipating siloed care, improving resources to facilitate self-management so individuals know of “the programs and how they can sustain you” (I&C). There was consensus agreement by the majority for a need to embed improved health practitioner education around communication in the context of complex multimorbidity so that “good evidence-based care is always provided” (HP). The training of youth mentors, as well as other age-matched peer mentors, to provide ongoing support for improved health choices would be an important step towards supporting ongoing behavioural change.

4. Discussion

Care coordination across the continuum of CKD was seen as crucial by all participants in the current study who identified the urgent need to have a consistent source of information, facilitate clear referral pathways and centralise data sharing among health professionals. The distinctive feature of the proposed kidney healthcare framework, developed from the study findings (Figure 4) is its emphasis on the important linking role of GPs and GP practice nurses with allied health professionals, kidney care nurses and specialists, and between tertiary and primary care services. Importantly this work identified a need for the provision of professional development around communicating complex information to individuals with multi-morbidities. The initiatives proposed in the current study align with those found in the literature. These include fund raising for screening awareness, the promotion of early opportunistic screening [32], and creating integrated Apps that compile an individual’s health information, medical history and medications [33,34]. These initiatives also support a multidisciplinary approach to care delivery which have shown promise in slowing disease progression [9,10,11,12].

This investigation and previous studies have identified an urgent need to strengthen the communication bridge between health professionals and individuals living with CKD and their carers [3,15,35]. Boonstra et al. [36] reported that patients required health care professionals to explain CKD self-management better to prevent kidney deterioration. The authors recommended new interventions be developed based on behavioural approaches to optimise self-management. The current study concurs with previous findings that health professionals need training to improve recognition and support of patients with low health literacy and multimorbidity [3,15,22,36]. Recent work in the same health district [37] in the kidney disease dietetic clinics demonstrated that the use of health-literacy-sensitive communication techniques (teachback, plain language) was associated with improved satisfaction, reduced fail-to-attend rates and improved diet quality [37].

Several studies have similarly utilised co-design methodology to develop a model of healthcare that aims to improve outcomes for co-morbid diabetes and CKD [2,22,23]. Distinctive features of these models included routine screening for psychological morbidity; patient-support through a phone advice line; and focused primary healthcare support in the management of diabetes and CKD. Zumbudzi et al. conducted an evaluation with 33 participants who had experienced a revised integrated model of CKD care and reported that the integrated diabetes and kidney service improved health and self-management of health [38]. However, the authors found that health professional education and patient self-management remained challenging. A key concern identified via the community workshops and in previous research [2,3,8,22,23] was the difficulty in achieving effective self-management in the context of complex disease information, multimorbidity and siloed, rather than collaborative, health care delivery.

Strengths and Limitations

While the strengths of this study lie in its participatory and qualitative approach, regional specificity, temporal constraints, and potential subjectivity present limitations. The next steps for research should focus on broader geographic exploration and development of the changes within the proposed kidney framework. This aims to integrate meaningful improvements with existing systems. Additionally, continued consumer and public involvement remains crucial for driving meaningful changes in CKD care practices. While this resource intensive approach is considered best practice for eliciting consumer concerns and designing healthcare to meet consumer needs, it remains challenging to support in a fiscally limited health care environment.

5. Conclusions

This study highlights a crucial need for enhanced care coordination in CKD. Participants stressed the urgency of establishing a consistent information source, clear referral pathways, and centralised data sharing among health professionals. The proposed kidney healthcare framework aims to support various health professionals, fostering linkages between primary and tertiary care. Emphasis is placed on professional development, particularly in communicating complex information to individuals with multi-morbidities. Notably, co-designed healthcare models show promise in improving outcomes but underscore persistent challenges in effective self-management amidst complex disease information and multimorbidity.