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Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE

Partnering with consumers and practising clinicians to establish research priorities for public hospital maternity services

Roni Cole https://orcid.org/0000-0001-5881-0311 A * , Lauren Kearney https://orcid.org/0000-0003-0299-6537 B C , Bec Jenkinson https://orcid.org/0000-0001-6723-8898 D , Imogen Kettle A , Beng Ng A , Leonie Callaway https://orcid.org/0000-0002-0137-9935 B and Rachael Nugent https://orcid.org/0000-0001-7366-042X A
+ Author Affiliations
- Author Affiliations

A Women’s and Children’s Services, Sunshine Coast Hospital and Health Service, Qld, Australia.

B Women’s and Newborn Services, Metro North Health, Qld, Australia.

C School of Nursing, Midwifery and Social Work, The University of Queensland, Qld, Australia.

D School of Public Health, The University of Queensland, Qld, Australia.

* Correspondence to: roni.cole@health.qld.gov.au

Australian Health Review 48(3) 321-331 https://doi.org/10.1071/AH23222
Submitted: 29 August 2023  Accepted: 7 April 2024  Published: 6 May 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.

Abstract

Objective

An innovative approach by two Queensland health services was taken to establish a shared maternity services’ research agenda by partnering with consumers and clinicians. The objective was to set the top five research priorities to ensure that the future direction of maternity research was relevant to end-user and organisational needs.

Methods

A modified James Lind Alliance (JLA) methodology was applied between August 2022 and February 2023 across two south-east Queensland Health Services which included five participating maternity units and involved partnership with consumers, healthcare professionals and clinician researchers. The reporting guideline for priority setting of health research (REPRISE) was followed.

Results

There were 192 respondents to the initial harvesting survey, generating 461 research suggestions. These were aggregated into 122 unique questions and further summarised into a list of 44 research questions. The 157 eligible interim prioritisation survey respondents short-listed 27 questions ready for ranking at a final consensus workshop. The top five question themes were: (1) maternity care experience, engagement and outcomes of priority populations; (2) increasing spontaneous vaginal birth; (3) experiences and perceptions of woman/person-centred care; (4) best practice care during the ‘fourth’ trimester; and (5) antibiotic use during labour and birth.

Conclusion

Applying an adapted JLA framework can successfully shape and establish a research agenda within Australian health services, through partnership with consumers and practicing clinicians. This is a transparent process that strengthens the legitimacy and credibility of research agendas, and it can form a replicable framework for other settings.

Keywords: consensus workshop, consumer, decision making, health service, James Lind Alliance, maternity care, research agenda, research prioritisation.

Introduction

Embedding meaningful end-user involvement in clinical research is critical to establish good research practice, optimise outcomes and maintain a responsive healthcare system. Historically, research programs and research agendas have been at risk of being distorted by commercial and academic priorities that may be misaligned with real-world clinical concerns and the needs of end-users, such as healthcare consumers and practising clinicians.1,2 The evidence–practice gap arguably exists due to barriers such as these.

Despite burgeoning literature comprising millions of clinical research studies, the usefulness and translational benefit is often limited.3 Editors of high-impact medical journals have voiced concern for the growing number of publications that provide marginal clinical value.1,4 Less than 7% of all clinical trials are highly relevant to clinical practice.1 Consequently, there is an international drive to ensure that clinical medicine is more effective, evidence-based, cost-efficient and accountable, with consumer involvement and engagement in clinical research becoming an important global movement.1,5,6

In 2022 the Australian Government Department of Health implemented the National Clinical Trials Governance Framework outlining that healthcare organisations are to develop, implement and maintain systems to ensure that healthcare consumers are partners in all aspects of clinical research, including the formulation of research agendas.7,8 Efforts must be made across health care to increase the involvement of consumers and clinicians when identifying research priorities, and ensuring that finite research resources are allocated to guarantee maximal impact for investment.9

Research mismatch has been evident in maternity care. Historically, it has consisted of disease-focused or morbidity-driven research programs led by academics, which may not address the needs or aspects of care most important to the majority of pregnant, birthing and postnatal women and their families.10 By partnering with research end-users during the development and implementation of research agendas, the relevance of the research that health services engage with will be strengthened. Studies demonstrate that healthcare consumers, specifically maternity consumers, are well able to articulate researchable questions when provided with an opportunity and supported to do so.2,10

Therefore, in response to growing demand for high-quality maternity services and competitive research resources in south-east Queensland, Australia, we undertook a collaborative research priority setting project. Partnering equally with consumers and clinicians, we aimed to jointly establish the top maternity care research priorities for our region while creating strong collaborations between the two health services, university partners and active healthcare consumers to inform embedded, responsive research to meet local needs.

Methods

Design

We used a consensus-based approach, designed to equally partner with consumers and clinicians to prioritise the most important unanswered research questions in maternity care. A modified James Lind Alliance (JLA) priority setting methodology was applied following the processes and methods described in the JLA guidebook.11 The JLA approach was chosen as the most apposite method for this project due to the truly meaningful patient and public involvement, moving beyond tokenistic participation, to ensure that our future research efforts best aligns with the needs of end-users. The reporting guideline for priority setting of health research (REPRISE) was followed to report this project.12

Setting, scope and ethics

The Maternity Care Research Priority Setting Project was conducted across the greater northern Brisbane and the Sunshine Coast regions in Queensland, Australia. The two participating Health Services have developing clinical research units with some established research resources embedded within the maternity services. The collaborating end-users of maternity care research included women currently accessing maternity care or who accessed maternity care in the past 3 years at the health services, their birthing partners or support people, key healthcare practitioners, clinician researchers and representatives from maternity care consumer organisations and health service staff.

The project’s scope was to identify and prioritise unanswered research questions about maternal and perinatal health care that consumers, families and clinicians perceived to be important. Consistent with the JLA approach, a clear scope was defined within which to set the priorities. Areas that were considered out of scope were:

  • research questions not specific to direct or indirect maternity care;

  • specialised neonatal care research questions;

  • research that did not have translational impact and relevance to consumers’ care within the participating health services; and

  • research questions for which there is significant work already underway locally (e.g. stillbirth via the Centre of Research Excellence in Stillbirth13).

Ethics approval was received from The Prince Charles Hospital Human Research Ethics Committee (HREC/2022/QPCH/86078).

The research priority setting process

The JLA research process involved five sequential stages: initiation, consultation, collation, interim ranking, and final priority setting.

Stage 1: initiation

The project was overseen by a steering group of 13 key stakeholders of maternity care services across the two participating hospital and health services (Table 1). The initial steering group meeting members agreed on the scope of the Maternity Care Research Priority Setting Project and developed the harvesting survey for distribution in the consultation stage. The harvesting survey was the first survey developed during the JLA process and was designed to gather, or ‘harvest’, the maternity care research end-user survey respondents’ ideas and suggestions for areas of possible research need.

Table 1.Stakeholder representation in steering group.

Stakeholder representativesMetro North Health HHSSunshine Coast HHS
Clinician researchers employed in the health service11
Consumers/consumer advisors21
Obstetric medical officers11
Midwives22
Perinatal allied health practitioner10
Health service executive leadership10

HHS, hospital health service.

Stage 2: consultation

The harvesting survey developed by the steering group was available via Microsoft Forms between 25 October 2022 and 9 January 2023. The survey weblink and QR code was disseminated to relevant stakeholder groups via posters displayed throughout the two health services’ (inclusive of five maternity units) clinical areas; social media channels; and emails to health service staff.

The survey included demographic questions including which hospital the maternity care was received from, and screening questions to ensure eligibility. Clinicians were asked about their healthcare role and at which hospital they primarily worked. Demographic data were analysed regularly, with additional communications for underrepresented groups subsequently targeted.

Consumer respondents were asked to reflect on their maternity care experience and respond to two free-text questions:

  • What areas of maternity care could be further improved?

  • What should research focus on in maternity care?

Clinician respondents were asked to reflect on their experience as a maternity care provider and respond to three free-text questions:

  • What areas of maternity care could be further improved?

  • What areas of maternity care need more evidence to demonstrate the effectiveness of interventions, or areas for de-implementation?

  • What are key unanswered questions for maternity care?

The steering group developed these questions with slight wording differences between the consumer and clinician questions to ensure that the experience or expertise of the survey participant was considered.

Survey respondents were invited to provide their email addresses if they were interested in being involved in the subsequent stages.

Stage 3: collation

The consultation stage provided raw research suggestions and questions via the harvesting survey. Responses were compiled and categorised into broad themes by the project team. To retain the integrity of initial submissions some suggestions were mapped to two or more categories. To reduce potential individual bias or misinterpreted categorisation, independent second checks were conducted by members of the project team. The steering group met to further consolidate suggestions within categories, generating ‘indicative questions’ capturing the ideas within each category, and removing duplicate/similar responses. If robust existing evidence was available, questions were subsequently removed.

Stage 4: interim prioritisation

To reduce indicative questions generated during Stage 3, an interim ranking exercise was distributed back to the Maternity Care community (via the same networks and processes used during Stage 2). Survey participants were invited to select up to 10 questions that they felt were most important to be answered by future research. The survey was available online via Microsoft Forms between 10 February and 24 February 2023. Equal weighting was given to each selection, and consumer and clinician ranking was stratified.

Stage 5: final priority setting

The final priority setting stage involved a 1 day (6 h) face-to-face workshop. The workshop used an adapted nominal group technique (NGT) as per the JLA framework. Workshop participants were identified to ensure a broad representation of all end-user maternity care groups. The workshop was divided into five sessions with successive phases of prioritisation, each session building on the one before (Fig. 1).

Fig. 1.

Workshop sessions and final priority setting process.


AH23222_F1.gif

During session 2 and session 4, breakout groups were provided with question cards (each card outlining one of the 27 shortlisted questions). In recurring order, participants described their top and bottom priorities together with their reasoning. Small group facilitators began arranging question cards into green, yellow and red zones. Questions placed in the green zone were viewed as most important by the group, while those in the red zone were less important. Questions that could not be agreed upon were placed in the yellow zone. By the conclusion of each breakout session, all question cards were ranked for discussion in the following whole group sessions.

Results

The top five research priorities identified by the Maternity Care Priority Setting Project reflect the concerns of women, their support/labour partners and healthcare professionals who provide maternity care in this project’s regions. Method results are summarised and presented in Fig. 2. Participant response rates and characteristics during each priority setting stage are listed in Table 2. A higher proportion of consumer participants responded to the initial survey and clinical researchers to the ranking, however, all groups were represented at varying levels through all stages.

Fig. 2.

Overview of maternity care research priority setting project methods and results.


AH23222_F2.gif
Table 2.Participant characteristics at each stage.

CharacteristicHarvesting survey n (%)Interim prioritisation survey n (%)Final workshop n (%)
Total eligible respondersn = 192 (100)n = 157 (100)n = 28 (100)
Representing stakeholder groupn = 192n = 157n = 28
 Consumer120(62.5)76(48.4)12(42.9)
 Maternity care provider72(37.5)81(51.6)16(57.1)
Consumer representation (of consumer responders)n = 120n = 76n = 12
 Current consumer77(64.2)34(44.7)1(8.3)
 Consumer in past 3 years21(17.5)16(21.1)9(75.0)
 Partner or support people22(18.3)26(34.2)2(16.7)
Clinician role (of care provider responders)n = 72n = 81n = 16
 Midwife52(72.2)59(72.8)8(50.0)
 Obstetric medical officer10(13.9)14(17.3)2(12.5)
 Perinatal allied health practitioner6(8.3)1(1.2)4(25.0)
 Nurse2(2.8)2(2.5)0
 Other (including health service management)2(2.8)5(6.2)2(12.5)
Aboriginal and/or Torres Strait Islander identityn = 192n = 157n = 28
 Yes5(2.6)4(2.5)2(7.1)
 No187(97.4)153(97.5)26(92.9)
Representing Hospital and Health Service (HHS)n = 192n = 157n = 28
 Metro North HHS68(35.4)54(34.4)13(46.4)
 Sunshine Coast HHS124(64.6)103(65.6)15(53.6)
Gendern = 192n = 157n = 28
 Female176(91.7)142(90.4)28(100)
 Male15(7.8)14(8.9)0
 Other1(0.5)1(0.6)0

A total of 161 responses were received for the interim prioritisation survey but four respondents did not meet participant eligibility; that is, they were not current consumers or consumers who had accessed care in the past 3 years at a participating health service, or a current maternity care provider who had provided care at a participating health service in the past 12 months.

Response outcomes to the harvesting survey and interim prioritisation survey

A total of 192 and 161 respondents participated in the harvesting and interim prioritisation surveys, respectively. Of the consumers who responded to the harvesting survey (n = 120, 63%), 77 (64%) were currently accessing maternity care, 21 (18%) had accessed maternity care in the past 3 years, and 22 (18%) identified as partners or support people. A further 72 (38%) responses were received from maternity care providers. At the interim prioritisation stage, participants included 76 (47%) consumers and 81 (50%) maternity care providers, and four respondents (3%) did not meet participant eligibility. Demographics and expertise of participants are listed in Table 2.

Categorising harvesting survey responses and evidence checking

Of the 192 respondents to the harvesting survey, 18 did not submit any research suggestions or questions. Most participants submitted a maternity care topic or area that they believed needed further research, rather than a specific question. In total, 461 suggestions or comments were submitted. Responses were excluded when they were unclear (n = 50, 11%) or out of scope (n = 42, 9%). The remaining 369 (80%) were grouped into 11 broad categories with some suggestions mapped to two or more categories: informed decision making (56); respectful care (34); the birth experience (98); birth trauma (15); vulnerable groups (17); models of care (56); perinatal mental health (21); postnatal experience (64); provisions of care (36); workforce (37); and specialised subjects (34). Suggestions were summarised into 122 questions. Answered topics (within current literature) were removed. Similar questions were merged, yielding 44 indicative questions. Due to the complexity of health care, some overlap between indicative questions remained.

Analysing the responses to the interim prioritisation survey

Consumer and clinician interim rankings of the 44 indicative questions are listed in Table 3. To ensure that equal emphasis was given to both consumer and clinician priorities, the top 20 ranked questions from each group were included, resulting in 27 questions being shortlisted.

Table 3.Interim prioritisation scores and rankings of all 44 indicative questions by group.

TotalConsumersClinicians
Workshop referenceSummary questionsScoreRankScoreRankScoreRank
AHow can we reduce rising rates of induction; operative birth; caesarean section? What are ways to increase spontaneous vaginal birth?871401471
BHow can we improve the maternity outcomes of vulnerable women? What factors or interventions increase the engagement of venerable or socially disadvantaged women?572247333
CWhat does informed decision making mean for women accessing maternity care?5232932311
DAre women adequately informed regarding the risks and benefits of induction of labour?523275258
EHow do we optimise women’s wellbeing during pregnancy to improve their opportunity to experience a physiological birth?5153321816
FWhat are the short- and long-term effects of antibiotic use during labour and birth for mother and neonate? Can we optimise their use?5151718342
GHow can healthcare professionals improve consistency and clarity of information provided to women?5072752311
HWhat are the underlying institutional factors that either build or erode the trust of women during pregnancy and childbirth?4682382311
IWhat is the optimal staff-to-patient ratio within maternity care to achieve the best neonatal and maternal outcomes with limited staff burnout?4682110258
JHow do we identify and then close the gap between women’s experiences/perceptions of woman-centred care and what clinicians deliver?46101914276
KIs it feasible for public maternity services in Queensland to support home birth?43111523285
LWhat does a ‘safe’ birthing environment/context look like for women?40122841234
MHow can we improve initial home-based early labour management care? Does more supportive home-based early labour care and management improve maternal health outcomes?391321101816
NWhat is healthcare professionals' understanding of informed consent and how do they discuss this with women?381419141915
OIs a continuity-of-care model focusing on antenatal and postnatal care delivery a feasible and sustainable model of care for all women?38141328258
PWhat is the impact of social media on consumer confidence in health services and treatment options and decision making?37161034276
QWhy is giving birth traumatic to so many women? What are the protective factors?361719141718
RWhat are the benefits and risks of separating babies from their mothers at birth for medical interventions?351821101431
SWhat is best practice care in the fourth trimester?351818171718
TCan we differentiate intrapartum pyrexia as epidural related or from an infective source? Is there an association between maternal pyrexia and the use of epidural analgesia in labour?3518542304
UWhat is the relationship between length of stay and postnatal home visiting, maternal experience, and maternal/neonatal re-admission or re-presentation?342113282114
VWhat are the contributors to a positive postnatal experience?332220131332
WHow do we increase access to water immersion? What are the risks and benefits with warm water immersion/birth for varying cohorts of women?322317181528
What education methods and information sources are best suited to women’s individual needs in maternity care?322316211622
What alternative models of care could be developed to provide women with some continuity of care if midwifery led continuity of care is not available?322316211622
XWhat is the best way to translate evidence to both clinicians and consumers?322315231718
What is the optimal approach to birth debriefing for both consumers and clinicians?312715231622
YWhat is the role of labour and birth companionship (emotional support) in public maternity settings and how can we improve this?3028238739
What is the longitudinal journey for first-time mothers experiencing induction of labour verses spontaneous onset of labour?292913281622
ZHow do we remove unnecessary barriers to supporting women to use warm water immersion for labour and birth?283017181136
What are the predictors of birth trauma? How can maternity services best review the incident and reasons for women suffering from birth trauma? How can these processes involve the woman and consumer perspectives?283015231332
What is the best way to induce women to achieve optimal clinical outcomes and improve women’s experiences of induction?283013281528
What is the best way to implement trauma-informed approaches to maternity care?273311321622
AAWhat is the role of public health services in using and engaging in social media platforms (e.g. TikTok; Instagram; Twitter) for Health Promotion?25348371718
What is the optimal timing of birth for low-risk healthy women?24359351528
What principles underpin good workplace culture and job satisfaction for staff working in maternity care?23367391622
How can we effectively support women and families who are experiencing high risk of, or current, mental health issues in the perinatal period?22371523739
Are maternity services abreast with contemporary sources of education methods and platforms?19389351037
What aspects of service delivery are required to ensure the long-term sustainability of caseload midwifery? What are the barriers to increasing maternity-led continuity of care?18397391135
How do we upscale relationship-based models of maternity care?1640837838
Is there a relationship between birth trauma and perinatal mental health?15411132444
How can maternity services offer equitable access to relationship-based models of care?1242641642
Which interdisciplinary mentorship pathways are most effective in developing clinicians?1043343739
How can we support core clinical staff and novice researchers in the acquisition and development of clinical research skills in the maternity care settings?844244642

Note: bolded rankings indicate the top 20 rankings in each group taken to the final priority setting workshop.

Final prioritisation workshop

The representation of diversity and level of experience and expertise of workshop attendees was strong, with 12 consumers and 16 clinicians (Table 2). Given the complexity of maternity care, the coalescing and theming of indicative questions continued throughout the final prioritisation workshop. As a result, the top five research priorities (Table 4) reflect overarching themes from which researchable questions were generated.

Table 4.Final maternity care research priorities.

1How do we enhance the maternity care experience, engagement, and outcomes of priority B populations?
(a) Implement and evaluate psychologically, physically and culturally safe spaces within which to access and receive care
(b) Upscale innovative relationship-based models of care
2What are the ways to safely A increase spontaneous vaginal birth?
(a) Reduce rising rates of induction; operative birth; caesarean section
(b) Improve support for women/childbearing people at home during early labour
(c) Increase access to warm water immersion during labour and birth
3How do we better align maternity consumers’ and clinicians’ experiences and perceptions of woman/person-centred care?
(a) Enhance informed decision making
(b) Address factors, such as social media, that either build or erode trust in maternity services
(c) Improve consistency and clarity of information that maternity consumers receive
(d) Reduce and respond to birth trauma
4How do we implement best practice care during the fourth trimester?
(a) Overcome barriers to keeping mothers/birthing parents and babies together throughout the postnatal period
(b) Optimise positive postnatal experience
5How do we safely minimise antibiotic use during labour and birth?
(a) Short- and long-term effects of antibiotic use for mother/birthing parent and neonate
(b) Investigate intrapartum pyrexia and its association with epidural
A Broadly encompassing psychological, physical and cultural.
B Priority should be given to women experiencing vulnerability or marginalisation. This might include Aboriginal and Torres strait Islander women; women with larger bodies; women living with complex health conditions; women experiencing social disadvantage.

Consensus between clinicians and consumers on the top research priorities were clear. During the final prioritisation workshop the participants agreed that the order of the top two ranked summary questions in the interim ranking survey needed to be switched. Hence, the final top research priority question ‘how do we enhance maternity care experience, engagement and outcomes of priority populations’ was ranked the number one priority ahead of ‘what are the ways to safely increase spontaneous vaginal birth’ even though the latter question had been ranked number one by both consumers and clinicians during the interim ranking exercise. Workshop discussions and post-workshop feedback from participants indicated that the nature and possible vulnerability of these priority population groups should be afforded precedence.

Discussion

This paper outlines the top five priorities for maternity services research agreed by consumers and clinicians across two large health services in south-east Queensland, Australia. To our knowledge, this is the first time that end-users have successfully partnered to set research priorities for maternity services in Australia.2 The process enabled diverse viewpoints to be considered, and for consensus to be generated in a collaborative and rigorous manner. This process should give researchers and funders confidence that research studies aligned with these priorities are positioned to answer questions that are not only important to, but can also positively impact, front-line maternity care.

The differing priorities that consumers and clinicians hold, as influenced by their lived experiences and clinical expertise, are noted, with some discrepancies observed between the priority ranking distributions of these two research end-user groups in the interim ranking stage. However, the degree of consensus between clinicians and consumers on the top research priorities was clear. Both groups independently prioritised research to safely reduce intervention in labour and birth, increase spontaneous vaginal birth rates, and improve the experiences and outcomes of priority population groups. Agreement on the importance of these contemporary issues was maintained throughout the final prioritisation workshop and is reflected in Priorities 1 and 2, as was a fairly consistent representation from the various respondent groups.

The process forged new relationships between researchers, clinicians and maternity consumers. Although early involvement of end-users is often overlooked, realisation of the benefits of end-user involvement is dependent on this continuing through all phases of the research cycle.5,6 The National Health and Medical Research Council is committed to fostering active and authentic consumer engagement for all health and medical research throughout the entire research cycle.8 Health service executive were also invited to participate during each stage of priority setting. This provided an effective feedback loop that allowed for consideration of resource allocation operationally and helped set the top priorities within the health service’s research agenda. Future research should map how these priorities are taken up by researchers, and how end-user involvement is maintained.

Through improved transparency of research priority setting methods, and partnering with consumers and practising clinicians, the acceptability and implementation of the identified research priorities will be strengthened.5,6,12 Furthermore, research efforts and funding can be invested in generating evidence that is of greatest importance to all stakeholders where studies that have outcomes with greater clinical value can be optimised.1,12

Limitations

We recognise some limitations with the modified JLA approach. First, given that the sample was drawn from two health services in one Australian state, the results may not be generalisable to other maternity contexts. However, the participating hospitals in this study are typical of many maternity facilities and included a rural, large regional and quaternary unit (inclusive of a large telehealth and referral receiving service, when high-level care is required).

A further limitation of this study is that relatively few people from marginalised groups participated, such as people who identify as culturally and linguistically diverse (CALD) or lesbian, gay, bisexual and transgender and others. Their inclusion is reliant on established relationships with communities and (in the case of the CALD community) the translation of study materials into community languages. Efforts to build these relationships and enable the involvement of more diverse voices should feature prominently in future research priority setting activities. The representation of consumers with health conditions associated with a higher burden of unwellness and healthcare utilisation during maternity care, for example congenital cardiac disease, or gestational diabetes, may also have been limited. It is acknowledged that more specific and targeted research priority setting may therefore be warranted for specific at-risk maternity population groups or health conditions.

Conclusion

This project has successfully partnered with research end-users to generate a shared research agenda. Our top five research priorities have been endorsed via a robust and validated process involving local consumers, midwifery, medical, allied health staff and hospital executives, and can confidently be championed as maternity research priorities for the coming years. A modified JLA priority setting framework can be successfully applied within Australian health service settings to identify research priorities. It is a transparent process that strengthens the legitimacy and credibility of research agendas and is replicable across different contexts.

Data availability

The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.

Conflicts of interest

The authors declare that they have no conflicts of interest.

Declaration of funding

This work was supported by SERTF and Wishlist’s Departmental Research Capacity Building Seed Grant [2021-06]; and Health Translation Queensland Consumer and Community Microgrant. Funders were not involved in the study design, analysis or writing of this manuscript.

Acknowledgements

The authors express their sincere thanks to all consumers and clinicians who participated in this study for their valuable engagement.

Author contributions

RC: study conceptualisation and research design, data collection and analysis, manuscript preparation and revisions. LK: study conceptualisation and research design, grant application, data collection and analysis, and manuscript writing. BJ: data collection and analysis, and manuscript writing. IK: data collection and analysis, and manuscript writing. BN: grant application, data analysis, and manuscript writing. LC: data collection and analysis, and manuscript writing. RN: study conceptualisation and research design, grant application, data collection and analysis, and manuscript writing.

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