A qualitative analysis of the needs and wishes of people with type 2 diabetes and healthcare professionals for optimal diabetes care.

AIM: Globally, type 2 diabetes care is often fragmented and still organised in a provider-centred way, resulting in suboptimal care for many individuals. As healthcare systems seek to implement digital care innovations, it is timely to reassess stakeholders' priorities to guide the redesign of diabetes care. This study aimed to identify the needs and wishes of people with type 2 diabetes, and specialist and primary care teams regarding optimal diabetes care to explore how to better support people with diabetes in a metropolitan healthcare service in Australia.
METHODS: Our project was guided by a Participatory Design approach and this paper reports part of the first step, identification of needs. We conducted four focus groups and 16 interviews (November 2019-January 2020) with 17 adults with type 2 diabetes and seven specialist clinicians from a diabetes outpatient clinic in Brisbane, Australia, and seven primary care professionals from different clinics in Brisbane. Data were analysed using reflexive thematic analysis, building on the Capability, Opportunity, Motivation and Behaviour model.
RESULTS: People with diabetes expressed the wish to be equipped, supported and recognised for their efforts in a holistic way, receive personalised care at the right time and improved access to connected services. Healthcare professionals agreed and expressed their own burden regarding their challenging work. Overall, both groups desired holistic, personalised, supportive, proactive and coordinated care pathways.
CONCLUSIONS: We conclude that there is an alignment of the perceived needs and wishes for improved diabetes care among key stakeholders, however, important gaps remain in the healthcare system.

What is already known? What this study has found? What are the clinical implications of the study?

The importance of person‐centred and integrated diabetes care is well recognised. However, diabetes care is often fragmented, resulting in suboptimal support. As healthcare systems and consumers embark on digitalisation, we believe it is timely to reassess stakeholders' priorities to guide the redesign of diabetes care.

This Participatory Design study found there is an alignment of the perceived needs and wishes for improved type 2 diabetes care among people with diabetes and healthcare professionals, however, important healthcare system gaps remain.

Healthcare pathways could be improved most if holistic, personalised, proactive and coordinated support for people with type 2 diabetes was implemented.

INTRODUCTION

Type 2 diabetes mellitus care can be complex and requires, among other components, continuous self‐management, multidisciplinary team input and community support. However, its steeply rising prevalence increases pressure on the healthcare system and brings challenges relating to optimising diabetes care. Self‐management of diabetes has been widely recognised as key to achieving better health outcomes. Research also demonstrates that many people with type 2 diabetes (PWD) wish to be more actively engaged in their own care and live their life as independently as possible. ,

A scoping review by the World Health Organization (2016) on integrated care models proposed an explicit focus on the needs of the individuals and self‐management. It defined integrated care as an approach to support person‐centred healthcare systems by the delivery of services designed according to the multidimensional needs of the individuals and delivered by a coordinated multidisciplinary team working across different settings and levels of care.

There has been a gradual, albeit slow, shift in medical approach over the years leading organisations to implement person‐centred models, that are respectful and trusting and take into consideration PWD values and preferences as well as shared decision making, including models developed in Australia. , These have shown to be clinically effective with enhanced PWD satisfaction and self‐management engagement and decreased health service utilisation.

Despite all recent efforts, worldwide, models of diabetes care are still considered fragmented and provider‐centred, with many PWD not meeting diabetes management targets. In Australia, non‐coordinated contributions from primary and specialist healthcare professionals (HCPs) are common, leading to duplication, resource wastage and PWD dissatisfaction. , More than half of Australians living with type 2 diabetes still do not meet management targets and only half achieve recommended glycaemic targets.

New technologies offer the opportunity to facilitate a redesign of the fragmented diabetes care by improving linkages between main stakeholders and access to services. PWD also recognise their potential to assist diabetes self‐management. As healthcare systems and stakeholders, including health consumers, embrace digitalisation, we believe it is important and timely to review stakeholders' priorities.

Stakeholder involvement is fundamental in redesigning diabetes care to promote PWD and provider activation for sustainable change. Growing evidence suggests that involving PWD leads to better care, improved quality of life and reduced health service utilisation by developing strategies aligned with their needs. Furthermore, HCPs must also guide and be willing to implement new care pathways, since a revision of workflows may be needed. Consequently, this study undertook essential stakeholders' consultation to redesign type 2 diabetes care using Participatory Design. This method has been proven valuable in healthcare redesign and development of sustainable practical solutions by actively involving stakeholders in the design process. The Capability, Opportunity, Motivation and Behaviour (COM‐B) model describes behaviours, in this case the management of type 2 diabetes, as the result of interactions between: knowledge and skills (Capability); social and physical environment (Opportunity) and emotions and plans (Motivation). COM‐B was used to organise the data collection and analysis as optimising type 2 diabetes management requires individual and collective behaviour change in the complex environmental context of healthcare services.

Aim

This study aimed to identify the needs and wishes of PWD, and specialist and primary care teams regarding optimal type 2 diabetes care to explore how to better support PWD in a metropolitan healthcare service in Australia.

METHODS

Participatory Design

This project was guided by a Participatory Design approach, a user‐centred methodology originated from action research, which provides concerned parties the opportunity to contribute to the definition of a problem, its source and solutions.

The project involved a three‐step iterative process: (1) identification of needs, (2) generation of solution ideas and (3) testing and retesting of solutions (Figure 1). All steps were guided by key stakeholders' contributions, and information uncovered at each step influenced the next until a solution was designed and endorsed by all. Step 1 included a literature review, published separately as a systematic review, and review of grey literature. This article reports the subsequent part of step 1—focus groups and interviews with stakeholders. The solutions and care pathways generated in steps 2 and 3 will be reported separately.

FIGURE 1

Participatory Design steps

Recruitment of participants

All PWD participants resided in Southeast Queensland, Australia, and were recruited at the Princess Alexandra Hospital (PAH) specialist diabetes outpatient clinic in Brisbane. Participants were 18 years or older, able to understand spoken and written English, and physically and mentally capable of participating in the study. The diabetes educators at the clinic informed PWD attending an appointment of the study and one researcher (DB) regularly visited the clinic to provide more information to those interested and manage consent and enrolment.

All specialist HCPs were staff members of the PAH diabetes clinic. Specialist diabetes teams include endocrinologists, diabetes educators and dietitians, among others. PWD who have complex diabetes beyond the perceived management capacity of the primary care practitioner are commonly referred to such services for additional support. The principal investigator and clinic director (AR) informed all team members about the study and a researcher (DB) approached them when visiting the clinic, outlining project details and managing consent and enrolment if interested. Primary HCPs were recruited at an external primary care network seminar and via snowball from various clinics in Brisbane.

Recruitment ceased when the sample held enough information power and new insights about the topic, considering the study aim, the use of an established framework and quality of information obtained. This was assessed continuously along the data collection process and initial data analysis.

Ethical considerations

All participants gave informed consent prior to participation. The project was approved by the Human Research Ethics Committee of Metro South Hospital and Health Service and The University of Queensland (reference number: HREC/2018/QMS/48462).

Data collection

We first identified reported needs of PWD and HCPs through a literature review, which supported the preparation of the semi‐structured focus group and interview guide (Appendix A). Two researchers (DB and MJ) trained in qualitative research conducted and audio‐recorded the interviews and focus groups between November 2019 and January 2020. They had no personal or professional clinical relationship with the participants. Focus groups with PWD were conducted in a casual university space and interviews and focus groups with HCPs were conducted in hospital campus meeting rooms. Individual interviews by phone or videoconference were used with participants not willing or able to participate in group discussions, due to time availability, distance, mobility or a dislike for sharing ideas in groups.

Participants completed a short questionnaire: basic demographics, diabetes duration and treatment for PWD, and professional role and experience working with PWD for HCPs. Participants were offered reimbursement of their travel cost and a grocery voucher to thank them for their time.

Data analysis

Audio‐recordings were transcribed verbatim and de‐identified transcripts were analysed using NVivo 12 software applying the six phases of reflexive thematic analysis by Braun and Clarke, by following a process of analysing text for recurring patterns. , This method was used because we wanted to critically engage with the data in an organic and iterative way and be able to identify unexpected patterns, without the use of fixed coding frames, apart from the use of a theory of behaviour change to organise the initial coding. We, therefore, applied both deductive and inductive thematic analysis to interpret and describe the data by two researchers (CS and DB). DB has many years of experience in diabetes self‐management research and case management and CS has training in health promotion. When needed, themes and subthemes were discussed with a third researcher experienced in qualitative analysis (MJ).

Before the initial coding, transcripts were read thoroughly to capture an overall impression of the data (Phase 1—‘familiarisation’).

In the coding process, the first coder (CS) initially deductively analysed the transcripts using the COM‐B model to organise the data and later used an inductive approach to explore latent content of the result of the first step. Here, sections of the text were labelled with codes to describe their meaning (Phase 2—‘generating codes’). In a final step, codes were then organised and categorised into main themes and subthemes according to similar patterns (Phase 3–5—‘searching, reviewing and defining themes’).

The second coder (DB) performed independently the steps previously described using 10% of the data to identify and discuss possible personal assumptions and omissions. Both coders then reviewed together all themes, subthemes and quotes and summarised them in tables (Phase 6—‘producing the report’). Data from PWD and HCPs were analysed separately. One participant with diabetes reviewed the wording to report the themes and sub‐themes to check if it was still representative of PWD's views.

Participants

In total, 17 participants with diabetes contributed to our study. Seven participated in two focus groups (three to four participants each) and 10 participated in individual phone or videoconference interviews (Table 1 and Appendix B). The median age was 61 years (range 34–74) and there was gender balance. Most of the participants had completed a trade, technical certificate, diploma or less (94%, n = 16/17). The time since the participants' diagnosis varied from 5 to 45 years (median 19 years). All participants took antihyperglycaemic medications (71% oral medications, 77% insulin, 6% injectables—non‐insulin).

TABLE 1

PWD demographics and diabetes duration and treatment

Demographics and diabetes diagnosis and treatment	n (%) or median (range)
Age (years)	61 (34–74)
Gender
Female	8 (47%)
Male	9 (53%)
Education
Year 8–10	2 (12%)
High school	5 (29%)
Trade or technical certificate or diploma	9 (53%)
Undergraduate degree	1 (6%)
Living arrangements
Alone	6 (35%)
Spouse/partner/other family members/friends	11 (65%)
Employment
Employed, full‐time or part‐time	7 (41%)
Unemployed	5 (30%)
Retired	5 (29%)
Aboriginal and/or Torres Strait Islander identity
Yes	1 (6%)
No	16 (94%)
Years since diagnosis	19 (5–45)
Treatment
Any medication	17 (100%)
Oral antihyperglycaemic	12 (71%)
Injectables—non‐insulin	1 (6%)
Insulin	13 (76%)

Fourteen HCPs from primary (n = 7) and specialised care (n = 7) took part (Table 2 and Appendix B). One focus group included three GPs and one practice nurse and the other included three specialist HCPs (two endocrinologists and one allied health), and one primary care diabetes educator. The latter participant also took part in a follow‐up individual interview as she had arrived late for the focus group. Two specialist diabetes educators participated in an interview together. The remaining HCPs (n = 4) took part in single interviews. The HCPs' median number of years of experience working with diabetes was 10.5 (range 5–26) and on average they saw 15 PWD per week (range 1–90).

TABLE 2

HCPs' demographics, professional role and experience

Demographics, professional role and experience	n (%) or median (range)
Age group
25–34	3 (21%)
35–64	11 (79%)
Gender
Female	9 (64%)
Male	5 (36%)
Role
Primary care	7 (50%)
General practitioner	5 (36%)
Diabetes educator	1 (7%)
General practice nurse	1 (7%)
Specialised care	7 (50%)
Endocrinologist	2 (14%)
Diabetes educator	3 (21%)
Allied healthcare professional	2 (14%)
Setting
General practice clinic	6 (43%)
Hospital	7 (50%)
Hospital and general practice clinic	1 (7%)
Primary care clinics with multidisciplinary focus	3 (43%)
Years working with type 2 diabetes patients	10.5 (5–26)
Type 2 diabetes patient consultations per week	15 (1–90)

RESULTS

Views about diabetes management from HCPs and PWD are presented in three tables according to components of the COM‐B model: Capability (Table 3), Opportunity (Table 4) and Motivation (Table 5). Main themes from both groups often overlapped and are presented combined reporting the PWD sub‐themes (views about their situation and how diabetes care and HCPs could better support them) and HCP sub‐themes (views about PWD situation and how diabetes care and HCPs' activity could better support PWD). One separate theme was identified in the HCPs analysis in relation to their own needs and this is reported separately. Illustrative quotes representative of each main theme are presented in Appendix C.

TABLE 3

Themes and sub‐themes pertaining to knowledge and skills (COM‐B header Capability)

Main themes	PWD sub‐themes	HCPs sub‐themes (views about PWD situation and how HCPs' activity could better support PWD)
Capability
More knowledge, information and skills	More knowledge about diabetes and long‐term impact—early and individualised way	More PWD's knowledge about diabetes and complications—newly diagnosed
	More knowledge about food choices and preparation, medication, and blood glucose monitoring	More PWD's knowledge about self‐management
	More access to tailored, comprehensive, clear and up to date information including via online and mobile resources	More access to tailored, comprehensive, clear and up to date information for PWD using technology
	Skills to apply knowledge and make more complex decisions

TABLE 4

Themes and sub‐themes pertaining to physical and social environment (COM‐B header Opportunity)

Main themes	PWD sub‐themes	HCPs sub‐themes (views about PWD situation and how HCPs' activity could better support PWD)
Opportunity
Social support—family, friends and other PWD	Include family in diabetes care	PWD making changes as a family
	Learn from others—successful examples are good motivators	PWD to share experiences
	Online social support
Community resources	‘Wellness centre’ and community meetings	Available community resources for PWD
Themes and sub‐themes focused on diabetes care service provision:
Holistic approach	‘Main thing is the wellness aspect’	PWD's physical and mental wellbeing
	More than just weight and medication	‘More than just numbers and glucose’
More personalisation	HCPs remembering preferences and personal achievements	HCPs remembering personal activities and personal achievements
	Personalised goals and plans—acknowledge what they can do	HCPs understanding PWD preferences, needs and limitations
Support and encouragement from HCPs	Good relationship with HCPs	PWD and HCPs relationship and rapport
	Feeling more than just a number	PWD feeling valued and HCPs non‐judgemental language
	Shared decision making	Ownership of diabetes care and professional role
More coordination	More communication and collaboration between all HCPs	HCPs team‐based approach (including prompt advice for primary care)
	Shared health care data	Shared health care data
	Care coordinator—one person for all of your diabetes assistance	Case manager—one point of contact, an advocate
	‘Wellness centre’—a casual place with all services under the same roof	‘Super clinic’—all services under the same roof, always the same HCPs
Proactive assistance	Genuine focus on prevention	More focus on secondary prevention
	‘Accountability’—someone watching health data	Monitoring health data, including remotely
	Prompt access and someone to contact	Prompt care
	Regular support with a long‐term perspective	Regular and long‐term care
	Improve access using technology	Increase use of telehealth

TABLE 5

Themes and sub‐themes pertaining to emotions, evaluations and plans (COM‐B header Motivation)

Main themes	PWD sub‐themes	HCPs sub‐themes (views about PWD situation and how HCPs' activity could better support PWD)
Motivation
Emotions and burden of living with diabetes	Shock, denial and fear at diagnosis	PWD's struggle with diagnosis and lifestyle changes
	Frustration, anger, guilt, stigma	PWD's depression, anxiety, distress, social stigma
	‘It's your fault’—feelings of being judged	Avoid ‘shaming’—HCPs finding the best communication language
Beliefs and motivation to manage diabetes	‘It's not that serious yet’	Often only when symptoms appear, PWD realise the seriousness of diabetes
	Feelings of not being able to manage diabetes or change behaviours	Make PWD believe they can manage their diabetes
	It is difficult to get motivated	Lack of PWD's motivation as main barrier Emphasis on PWD's engagement
Plans and goals	Monitoring, keeping records and reminders	Monitoring and keeping records
	Diabetes impacts on daily routine and hard to maintain new routine	‘No holidays’—PWD's constant self‐management

Knowledge and skills (COM‐B header Capability)

Themes under knowledge and skills impacting ‘Capability’ to best manage diabetes related to obtaining and providing to PWD detailed and tailored information and skills, which were considered essential for good diabetes self‐management and motivation.

PWD expressed the need for individualised information about the seriousness of diabetes early on. One person with diabetes mentioned:

Because I really went untreated with my diabetes for a long time because I didn't realise just how serious it was (aged 46, 6 years since diagnosis)

PWD found it challenging to obtain sufficient information about diabetes management, especially how to make good food choices:

I just found I was hitting my head against the wall sometimes trying to get information (aged 56, 5 years since diagnosis)

Both groups agreed that there is a clear need for more personalised information and better ways of delivering it. HCPs highlighted the requirement to assess PWD needs before providing information.

Physical and social environment (COM‐B header Opportunity)

Themes under physical and social environment mainly related to social support, community‐delivered resources and diabetes healthcare service provision preferences.

Both groups mentioned that support from family, friends and other PWD is important and learning from other PWD successful examples is helpful and referred to the importance of community resources to support diabetes management. PWD wished for a place where everything needed for diabetes care would be provided under the same roof, described as a "wellness centre" (aged 60, 30 years since diagnosis), where they can also meet other people to share experiences:

Like community meetings where you can talk to people who have lost weight, got foot issues, GP issues (aged 70, 21 years since diagnosis).

Regarding diabetes care service provision, both groups referred to the importance of a holistic approach, by which individuals in their whole and their well‐being are considered, not just their blood glucose levels, medications or weight. PWD mentioned that “the main thing is the wellness aspect, you want to feel good” (aged 60, 30 years since diagnosis) “rather than, ‘you've got diabetes, give you a bit of script, off you go, we'll have a HbA1c in three months” (aged 60, 20 years since diagnosis).

PWD and HCPs agreed there is a need for more personalisation in service provision. They mentioned that, when working together to set goals, it is important to recognise that each individual has different needs and to “acknowledge the things that you can do” (person with diabetes aged 70, 21 years since diagnosis). One primary HCP highlighted the importance of "understanding your patients, how they live, talking to them about it, but also then also working with them about setting healthy goals" (26 years' experience)

Both groups emphasised the importance of HCPs support, which includes good rapport, non‐judgemental language and encouragement and HCPs making PWD feel valued and more than just a number.

It's like you're in a deli with a ticket, it's like, ‘now serving number 15’ (person with diabetes aged 47, 20 years since diagnosis).

Participants stated the value of shared decision making in diabetes care. One person with diabetes highlighted that HCPs should "treat you as a partner, because it's a shared thing. They've got knowledge that you want, and you've got experience that only you can give them to let them know how to treat your individual case" (aged 61, 19 years since diagnosis)

PWD and HCPs often mentioned the importance of having one HCP responsible for the diabetes care plan, referred to by HCPs as a “case manager”. This should be one person whom PWD can access for all diabetes assistance, someone who knows them well and an advocate. Both groups wished for more coordination, asking for more "logical" and less "disjointed" care. They frequently indicated that a knowledgeable GP is essential for coordinated care and that GP should be able to have prompt access to specialist advice. Participants also revealed the need for shared health care data and negative consequences from their absence, such as PWD frustration about poor acknowledgement of previous efforts.

Both groups stated the value of preventive and readily accessible care—receiving answers promptly and having someone monitoring health data.

I need that accountability. I find it more comfortable and satisfying that I know someone is there and if something suddenly happens then I'm able to get to help immediately. (person with diabetes aged 64, 8 years since diagnosis).

Participants referred to the potential of technology and suggested:

Online social support;

Remote monitoring, prompt care and reminders using technology;

Telehealth consultations to improve access;

Phone hotline and videoconferencing to enable GP access to diabetes specialist teams.

Emotions, evaluations and plans (COM‐B header Motivation)

Both groups often related to how emotions and beliefs positively or negatively impact on motivation to manage diabetes and the importance of tailored plans and goals. Specifically, PWD and HCPs mentioned that the many barriers PWD experience in their daily life often lead to negative emotions such as frustration and anger and that lack of motivation is common. Several HCPs referred to the importance of encouraging PWD engagement:

I think the missed part of that is still engaging patients. And, encouraging them to change lifestyles. And, I think involving them in their care (primary HCP, 14 years' experience)

However, feelings of not being able to manage diabetes or change behaviours were often expressed by PWD:

Why bother if it's not working (aged 46, 6 years since diagnosis)

One main perceived barrier was the emotional impact of being judged. PWD felt that other people's and HCPs' communication was sometimes judgemental and previous achievements infrequently recognised. One person with diabetes stated:

I thought it is frustrating because you're being given this tag, ‘You're a diabetic’. He [husband with diabetes] was made to feel that he was a bad person because he allowed it to happen (aged 64, 13 years since diagnosis)

HCPs expressed the struggle and the need to find the best language to communicate and avoid shaming.

Language is very important or dismissive language, saying, ‘you're fat’, or, ‘you're obese and you need to lose weight’, so shaming the patient or confronting the patient negatively I don't think is a healthy option (primary HCP, 26 years' experience)

PWD expressed their difficulty of integrating diabetes self‐management into their everyday routines, citing the burden of blood glucose monitoring and medication. Both groups agreed on the importance of collaborating towards tailored goals and plans, and monitoring them.

HCPs' own burden and needs

One theme identified in the HCP analysis not mentioned by PWD was the ‘HCPs’ challenging work’. HCPs revealed how their inability ‘to do more’ and motivate PWD also affects their own emotions and motivation, revealing it as "very frustrating" and "not easy". HCPs also reported their own barriers caused by the health services' funding system and diabetes management plans, such as time restrictions. They also raised the challenges to keep up to date with new treatments and guidelines.

We just don't seem to get the time to do it because we're too busy (specialist HCP, 11 years' experience)

DISCUSSION

Our team conducted focus groups and interviews with PWD and HCPs to obtain their experiences and views on optimal diabetes care. The growing availability and adoption of new technologies may offer opportunities not available in the past to support unmet needs, thus we believe it is timely to review stakeholders' priorities. Therefore, this study aimed to analyse the needs of stakeholders to later, explore creative solutions in the next steps of this project.

PWD expressed the need to be better equipped, supported and recognised for their efforts in a holistic way, receive personalised care at the right time, including tailored information, and improved access to connected services. HCPs agreed with the needs of PWD and further expressed their own burden regarding their challenging work. Overall, PWD and HCPs wished for holistic, personalised, supportive, proactive and coordinated care pathways.

Similarly to these findings, a systematic review conducted by our team concluded that generally both groups have similar views about components of diabetes care, but HCPs struggle to meet PWD's holistic needs. This demonstrates that there is an alignment of the perceived needs for improved diabetes care among main stakeholders, however, important gaps still remain. Other studies have identified gaps between what stakeholders wish for and what healthcare systems deliver. , Jensen et al. used a lifeworld theoretical perspective to understand the gap in hip fracture management in a Danish hospital and concluded that care was not giving voice to patients' social and subjective worlds and the biomedical discourse was dominating their interactions. Similarly, in our study some participants mentioned that HCPs should focus on overall well‐being and not only on blood glucose levels, medication and weight, indicating a need for a more holistic approach to care.

Both groups often referred to the burden of diabetes and its negative effect on emotional well‐being, highlighting the importance of acknowledging the challenges faced. Poor mental health and diabetes distress affect approximately 40% of Australians living with diabetes, however, they are inadequately accounted for in current models. Another Australian study also found that PWD felt that the psychological impact of living with diabetes was not heard, that care should focus not only on HbA1c levels, and that they were not being involved enough in their care. Accordingly, in our study PWD themselves emphasised the wish to be empowered and HCPs want to support this independence. However, PWD mentioned that they are not being provided with the tools and education to manage their diabetes. Collaboration for the development of personalised care plans and goals is also important to actively involve PWD in their own care and is associated with better outcomes, as they have the lived experience to care for their own individual needs.

Both groups acknowledged the importance of non‐judgmental language, however, language is still being perceived as judgemental by PWD and a challenge by HCPs, who struggled to find the appropriate way to communicate. Language that judges and shames may add to the burden of living with diabetes and undermine current efforts. Recently, the American Diabetes Association called for empowering language that is neutral, fact‐based and stigma‐free.

PWD not only mentioned the need to have the knowledge and skills to manage diabetes, they also wished for the skills to apply these to complex decision making, such as balancing efforts towards weight management and good food intake and their impact on blood glucose levels. This was not mentioned by HCPs and there may be a need for HCPs to recognise the importance of supporting PWD in making complex decisions in their individual diabetes management.

PWD engagement also requires providing HCPs with the resources, skills and motivation to empower PWD. Lack of HCPs support may be one of the reasons for the gap between what the stakeholders wish for and what the healthcare system can provide. Reasons expressed by HCPs included lack of time, funding and helpful resources. HCPs often expressed their frustrations about the limitations imposed by the healthcare system. Future care pathways should provide HCPs with the right tools and resources to facilitate person‐centred care, considering their constraints. Medical education and professional development programmes should emphasise this to change HCP culture more broadly.

This study's results provide further evidence of the fragmented care in Australia. Our participants clearly wished for more coordination and communication between HCPs, which per se represent a barrier to person‐centred care, resulting in poor acknowledgment of previous efforts and achievements due to lack of shared health data. Evidence suggests that technology can strengthen coordination between HCPs and shared collaboration between PWD and HCPs. Technology may also support long‐term behaviour change via remote monitoring, regular support and timely feedback and the provision of tailored information to empower PWD. Participants mentioned its advantages, including technology for remote monitoring, and the use of videoconferencing to improve HCPs access to specialised advice, which we believe should be explored further in new diabetes care pathways.

Using the COM‐B model allowed us to explore important components for collective behaviour change to support the management of type 2 diabetes, including, for example, not only PWD's but also HCPs' motivation, which we believe may have been missed without a behaviour change approach. This study gave stakeholders a crucial voice which will guide our design of new care pathways.

Strengths and limitations

Our study was reported according to the Standards for Reporting Qualitative Research (SRQR) checklist. We included HCPs from different settings and roles in diabetes care, to ensure that different perspectives were considered and recruited PWD who had contact with specialist teams and therefore are more likely to have experienced the currently fragmented care.

Individuals who agreed to participate are likely to have a special interest and more awareness about the needs for optimal diabetes care. Therefore, there may be some unaddressed needs. Most of our PWD participants have had type 2 diabetes for many years with more complex diabetes therefore findings may not be representative of the general population, including PWD newly diagnosed or managed by primary care only.

CONCLUSION

This paper reports part of the first step of a Participatory Design project to explore stakeholders' needs for optimal type 2 diabetes care. The next steps, including proposed solutions and redesigned care pathways, will be published separately.

We conclude that there is an alignment of the perceived needs for improved diabetes care among PWD and HCPs. Overall, both groups wished for holistic, personalised, supportive, proactive and coordinated care pathways. New care pathways should consider stakeholders' views to address the gaps between their wishes and the healthcare currently provided.

CONFLICT OF INTEREST

The authors have no conflict of interest to declare.

Focus groups/interviews	Participants	Duration (min)
Individual interviews with PWD	D1, 64 years old, 8 years since diagnosis	39
	D2, 74 years old, 45 years since diagnosis	38
	D3, 73 years old, 30 years since diagnosis	35
	D4, 46 years old, 6 years since diagnosis	33
	D5, 56 years old, 5 years since diagnosis	41
	D10, 34 years old, 15 years since diagnosis	35
	D11, 62 years old, 10 years since diagnosis	14
	D12, 52 years old, 13 years since diagnosis	46
	D13, 61 years old, 19 years since diagnosis	40
	D17, 47 years old, 20 years since diagnosis	50
Focus groups with PWD	D6, 72 years old, 30 years since diagnosis	83
	D7, 60 years old, 20 years since diagnosis
	D8, 66 years old, 21 years since diagnosis
	D9, 64 years old, 13 years since diagnosis
	D14, 60 years old, 30 years since diagnosis	70
	D15, 47 years old, 5 years since diagnosis
	D16, 70 years old, 21 years since diagnosis
Individual interviews with HCPs	GP1, general practitioner, primary care	14
	DE1, diabetes educator, specialist care	39
	AH1, allied healthcare professional, specialist care	48
	DE2, diabetes educator, primary care*	33
	GP5, general practitioner, primary care	31
Dual interview with HCPs	DE3, diabetes educator, specialist care	35
	DE4, diabetes educator, specialist care
Focus groups with HCPs	GP2, general practitioner, primary care	66
	GP3, general practitioner, primary care
	GP4, general practitioner, primary care
	PN1, general practice nurse, primary care
	EN1, endocrinologist, specialist care	48
	EN2, endocrinologist, specialist care
	AH2, allied healthcare professional, specialist care
	DE2, diabetes educator, primary care*

Quotes pertaining to knowledge and skills (COM‐B header Capability)
Main themes	PWD quotes	HCPs quotes
More knowledge, information and skills	“Because I really went untreated with my diabetes for a long time because I did not realise just how serious it was” (aged 46, 6 years since diagnosis) “Maybe even a short video of something that you can be recommended to watch, maybe somebody who's had amputations, or gangrene in the feet, or something that's going to shock you into action” (aged 52, 13 years since diagnosis) “I just found I was hitting my head against the wall sometimes trying to get information. (…) When your diabetes is a little bit hard to control or is anything other than the norm, there was nowhere to go to get general information” (aged 56, 5 years since diagnosis) “For that whole time, I've never been given the tools to control it myself” (aged 47, 5 years since diagnosis) “Because really, I had no idea of what to avoid. I just thought sugar was sugar. I had no idea that fruit could affect your sugar. I had no idea that carbohydrates turn to sugars. (…) And it all comes back to, like I said, education. I was uneducated on the whole food and the values of food” (aged 46, 6 years since diagnosis) “Information when you need it would be great. It could be phone, it could be in person, it could be chat room” (aged 64, 13 years since diagnosis) “I just think in general, we have got all this new technology and there's got to be better ways to get the information across” (aged 56, 5 years since diagnosis)	“And, I think that's still lacking, unfortunately, I think there's just not enough information out there for people to say – if you get in early, these are the things that you can achieve” (specialist HCP, 19 years' experience) “If you have got the skills and you can give them those skills and the knowledge to back it all up and to help them make those changes then you can actually get some very good results” (specialist HCP, 11 years' experience).” “A lot of patients would come on who are quite educated people, but they'd essentially been diagnosed with diabetes and put on medications and never been given any of the dietary advice or lifestyle advice (…) no one had ever told them that if they changed their diet and did some exercise, that their diabetes control would be better” (specialist HCP, 12 years' experience) “They do not want to be told what they already know (…) It might almost be useful for the patients to have a little form that they fill in before they see us to say, ‘Which of these things do you think you would like more information about today?’ and tick the box” (specialist HCP, 6 years' experience) “I think, there’s a lot of education we do that you don’t actually have to be a person to do it so I think we could actually get away with a lot more education as videos, like, training videos and stuff which can provide the basics of all the diabetes education and then you come in and see for the specific stuff” (specialist HCP, 11 years’ experience)