Meeting social welfare legal needs in end-of-life care: co-creation of a system-wide research partnership

Article history

The contractual start date for this research was in January 2022. This article began editorial review in May 2023 and was accepted for publication in February 2024. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The Health and Social Care Delivery Research editors and publisher have tried to ensure the accuracy of the authors’ article and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this article.

Copyright statement

Copyright © 2024 Hawkins et al. This work was produced by Hawkins et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

2024 Hawkins et al.

Social welfare legal needs in life-limiting illness

There is material within this section that has been reproduced from BMC Palliative Care under the Creative Commons licence http://creativecommons.org/licenses/by/4.0/.

Problems raising everyday legal needs are common in chronic illnesses. 1,2 They relate to social welfare matters for which the law defines rights, entitlements and protections, such as income security, suitable housing, employment rights, family issues, immigration, protection from abuse and the right to community care. 1–3 These social welfare legal (SWL) needs tend to cluster. People with multiple health needs, mental illness and/or social disadvantage are disproportionately affected, with a greater number and negative impact of SWL needs. 1–3 These groups are also least likely to access the help they need. 1,3 Unmet SWL needs become chronic stressors, generating morbidity in their own right and exacerbating chronic ill health. 1,4–6 Health and social inequalities have also been highlighted and exacerbated by the coronavirus pandemic. 7

Serious illness impacts on financial security through increased living costs and loss of employment. 8 One in four terminally ill people of working age spend their final year of life in poverty with people in deprived areas of northern England at increased risk. 9 Welfare benefits should provide a safety net, but evidence shows it frequently fails to do so with many struggling to access entitlements. 8

Our previous research found that SWL needs are prevalent in the last 12 months of life,2,10 generating significant practical day-to-day challenges, and psychological and emotional distress affecting both patients and carers. 2 People with more complex health or social care needs, people living in deprived, marginalised or isolated communities and people with non-malignant diagnoses are more impacted by SWL needs. 10

Social welfare legal needs often present first to healthcare providers, meaning health professionals are ‘critical noticers’ of SWL needs and have a key role in facilitating access to support but this is often overlooked. 1,2 A wide range of agencies and services provide SWL advice and support, including councils and the not-for-profit advice sector, which includes voluntary and community services (VCS). 10 However, these actors are rarely connected and geographically variable making navigation to advice and support very difficult, resulting in battles to secure rights as well as unmet needs. 2,10

Co-production

Effective awareness of advice and support therefore relies heavily on a place-based, multiprofessional approach from engaged and informed healthcare professionals. 1,2,11,12 In order to support quality improvement in health care, attempts to understand the system of interest should be as comprehensive as possible, taking into consideration patients’ and professionals’ unique expertise, knowledge and experience. 13 Rather than viewing health care as a product, this approach reframes the relationship, and power dynamic, between professional and patient as a co-produced service. 13 We refer to place-based as meaning an approach to partnering and collaboration between organisations responsible for delivering services, as those within a place, in this case, the North East region. Our partnership frames issues, connections and subsequent coordinating action to improve the lives of those within the region, as being the concern of those serving communities in the North East region. More latterly, newer members of the partnership were focused within the Teesside area.

Such shared work should be collaborative across agencies and should integrate performance and learning to facilitate continuous change for improvement. 14 This requires a shift away from traditional approaches to leadership and performance management and measurement. At the level of practice, this shift evolves a move towards a culture where evidence is used to support shared decision-making to improve health care that better aligns with the patient’s needs. 13 At the service provider level, evaluative co-production work generates evidence that can be used to help proliferate learning through understanding the system levers which may facilitate or inhibit patient-centred practice. 15,16

Interprofessional learning

Interprofessional education is said to occur when ‘two or more professionals learn with, from and about each other to improve collaboration and the quality of care’. 17 The World Health Organization has developed a framework for action on interprofessional education and it is argued that learning across professional groups has a ‘significant role in mitigating many of the challenges faced by health systems around the world’. 18

This type of intervention has been linked with an increased awareness of the value of collaboration and development of skills around communication, leadership, conflict management and co-ordination. 11 Improved participant self-efficacy is also reported alongside intellectual resources to engage in a collaborative approach to person-centred care which could improve service delivery by responding to the increasing complexity of healthcare needs. 11 Finally, attitudinal change towards patients is also a potential outcome of interpersonal learning (IPL), as well as participants’ perceptions of role adequacy, role legitimacy and work satisfaction. 11

Further evidence in the context of legal issues in life-limiting illness suggests that IPL raises awareness of the breadth and relevance of SWL needs to end-of-life care and the need for interprofessional, cross-agency team working. 12 Therefore, IPL can be considered a route to relational working across agencies, smoothing cross-boundary care and support. 12,18

Objectives

1. Convene a research partnership group across academics, multiagency service providers and members of the public with lived experience.

2. Reach consensus on key issues for successful place-based multiagency research in this area, including access and engagement with the intervention (IPL); research capacity across stakeholders; defining and evaluating success.

3. Co-create a complexity-appropriate research proposal with IPL as an intervention.

Methodological approach

Complexity science is increasingly being used as a way to understand healthcare systems, and complexity of SWL work has been highlighted by previous funded work by the research team. 19 This research acknowledges that outcomes are often unpredictable and the relationships between cause and effect are non-linear. 20 Therefore, rather than relying on traditional, causality-focused measures of effectiveness that are decided with minimal input from service users and often aligned to service-level performance indicators, this research sought to start by identifying meaningful outcomes for and with service users.

Our approach also aimed to be emergent. Emergence is ‘the process by which individuals, through many interactions, create patterns or solutions that are more sophisticated than could be created by an individual’. 21 To embrace a fully emergent approach, the circle of agency must extend beyond traditional top-down approaches to enable the participation of actors from across the system. 21 Therefore, we sought to explore how to co-produce the delivery and evaluation of IPL from actors from across the North East region in a way that measures what matters to service users. This emergent and integrative approach to building the partnership and evaluating its activities is reflective of developmental evaluation, where the role of research facilitates real-time iteration through the surfacing and sharing of concepts and issues that all participants can frame and reframe together for the purposes of learning and development. Typical to developmental evaluation, methods are eclectic and flexible, capable of supporting changes in thinking and practice. 22

Research activities

The project employed a range of methods to support the above objectives (see Figure 1 for project overview), described in Protocol v1.2.

FIGURE 1.

Learning flow from research activities. NIHR, National Institute for Health and Care Research.

Modified Delphi technique (Objective 2)

In response to study objective 2, a two-round online modified Delphi technique was employed (Figure 2). The initial round was developed from existing evidence and workshop findings. The second round was to agree upon key issues identified from the initial round for successful research partnership focused on end-of-life research from key stakeholders. The Delphi technique is a well-established approach to seeking consensus of the opinions of a group of experts through a series of questionnaires and was employed to develop evidence- and consensus-based recommendations on the content and delivery of IPL. 23

FIGURE 2.

Overview of modified Delphi technique.

This Delphi technique is reported in line with recommendations for the Conducting and REporting of DElphi Studies (CREDES). 24

Expert panel

There are no established guidelines on the optimal Delphi study panel size. 25 At the time of this consensus exercise, the partnership comprised 10 project team members [1 a patient and public involvement (PPI) representative], 3 additional PPI representatives and 20 recruited participants from a range of organisations (see Appendix 1). All were invited to participate. Partners brought a range of expertise, including lived experience, support of underserved groups, support of people living towards end of life, SWL needs or support.

Data collection

Data from the Delphi technique were collected in months 4 and 5. Both surveys were hosted using online survey tools and administered via e-mail. A consent statement was included on each survey’s introductory page. Participants were required to complete the consent statement on each survey. Reminders were provided via e-mail to help maximise response rates. All individuals who completed Round 1 were subsequently e-mailed links to Round 2.

In Round 1, participants were presented with statements detailing potential IPL outcomes (see Appendix 2, Table 2) and were asked to rate each item on a nine-point Likert scale from ‘least meaningful’ to ‘most meaningful’. Where appropriate, items included an ‘other’ option so participants could provide more relevant information and/or explanation. Free-text options were included at the end of each item to allow participants to suggest additional items. Round 1 also included questions on panellists’ characteristics. Separate sets of questions were included for PPI panellists (sociodemographic and clinical characteristics) and professional panellists (their workplace, role and experience).

A second round of the survey included the initial items from the original survey which reached agreement from at least 70% of participants, as well as additional recommendation items generated from Round 1. In Round 2, participants were asked to rate how meaningful they thought the different outcomes are to participants of the IPL programme (see Appendix 2, Table 3), organisations (see Appendix 2, Table 4) and patients and carers (see Appendix 2, Table 5) A summary of the results of the preceding round was shared and explained to panellists with the opportunity provided to reconsider their judgement.

Data analysis

The free-text responses from Round 1 were examined using directed content analysis. 26,27 All recommendations were assessed and coded inductively. Those sharing similar meanings were clustered into sections, each forming a primary category. Codes that did not align with these subcategories were integrated into newly formed subcategories generated through the inductive process. Subsequently, these subcategories were merged into broader, generic categories. These generic categories were reviewed with the research team to ascertain if any additional primary categories were needed.

There are no established guidelines on how to define consensus in Delphi studies. 28 Consensus levels of published Delphi studies were taken into account and the level of consensus for this Delphi study was set at 70%. 29–31 Consensus was therefore defined as at least 70% of respondents rating an item as ‘critically meaningful (score 7–9)’. Participant characteristics and importance ratings were analysed descriptively using Stata 17 (StataCorp LLC, College Station, TX, USA). All items that reached consensus in Round 2 among all respondents considered together were included in the final set of recommendations.

Project governance

A study advisory group, including the research team and sponsor research and development representatives, met twice during the project to review progress against protocol timelines, review budget and troubleshoot problems. The core research team (CH, HH, AP, YF, AW) met every month to keep tasks on track and learnings updated.

Patient and public involvement

Four PPI participants contributed at every stage of the project. They were recruited as patients and/or carers with lived experience of life-limiting illness and SWL needs and recruited through Newcastle Voice (https://voice-global.org/). One is a heart failure patient and current carer, one is a current carer, two are bereaved carers. One of this group has been a project co-applicant and is an author of this report (and subsequent publications), the other three are partnership group members. PPI participants brought important experiences and insights relating to inequalities in end-of-life care, including non-malignant diagnosis (including mental health issues), social deprivation, ethnicity and sexuality. PPI participants were paid for their time and made aware of the NIHR Benefits helpline and Department for Work and Pensions letter template to avoid impact of research participation on financial benefits.

The Research Design Service PPI panel was consulted as part of preparation of the follow-on research proposal; this led to key changes in our approach to public engagement in the next project.

Equality, diversity and inclusion

The partnership engaged a range of stakeholders to create a collaboration between academic organisations and organisations that are generally outside of health system research. A core activity of convening the partnership group was to focus on locations with significant social inequalities, poor health outcomes and high need for palliative care. Services supporting people in deprived communities or representing people experiencing homelessness and/or addictions, people with learning difficulties or mental ill health, asylum seekers and refugees, were engaged in order to extend the reach of the partnership group to underserved groups. This engagement is an ongoing activity.

Workshops were held online to maximise access and participation; partnership group members were encouraged to contact the core project team by e-mail or phone with any comments or feedback outside research events.

Objective 1: building a partnership

Objective 2: agreeing on key issues for successful multiagency research

While there was strong interest in the research, with all approached organisations agreeing to be part of the partnership, interpretation of Workshop 2 and Delphi technique showed that contributions had to account for the variable and flexible participation noted at the start of the findings section. The findings from the workshops and modified Delphi technique are presented below.

Modified Delphi technique

Responses: 26/33 (78%) Round 1; 16/26 (62%) Round 2.

Round 1 survey was sent to a total of 33 project group members, 26 (78%) completed it. Round 2 was completed by 16 (62%) of those who completed Round 1.

Out of 26 participants who completed Round 1, 31% (n = 8) were from university or a research network, followed by 23% (n = 6) from a charity, 15% (n = 4) were patients, carers or a member of the public and 12% (n = 3) from NHS. Others were from hospice (n = 2), council (n = 1), government organisations (n = 1) and commissioned substance misuse service (n = 1).

Out of 16 who completed Round 2, 31% (n = 5) were from a university or a research network, 31% (n = 5) were from a charity, 13% (n = 2) were patients, carers or a member of the public, 13% (n = 2) from NHS, 6% (n = 1) from hospice and 6% (n = 1) from commissioned substance misuse service.

Objective 3: co-creating a complexity-appropriate research proposal with interprofessional learning as an intervention

Following Workshop 2, we co-produced a research proposal in collaboration with members of the partnership group. The aim of the proposed research is to test feasibility, scalability and impact of IPL, through engagement with public, professionals and organisational leaders. This proposal was submitted for further NIHR funding in April 2023 [22/561 Palliative and End of Life Care (HSDR Programme)].

Principal findings

The findings provide evidence for the mechanisms which support the convening of a multidisciplinary research partnership, encompassing academics, multiagency service providers and members of the public with lived experience. Partnership recruitment was a positive experience, with overwhelming enthusiasm to be involved in addressing an issue which all participants could identify with. Participants shared a desire for change, relating to identification of SWL issues, timely access to support and better links between services. Impact at practice and policy levels was desired.

Engagement with research activities was very variable with seven recruits unable to participate at all. Capacity and funding were key barriers. However, our previous research experience in cross-agency collaborations has shown that, once aware of a project, partners are willing to be called on for specific input or one-to-one discussion.

Impact of patient and public involvement

The four PPI participants involved in the partnership group provided insights which shaped this project and the proposal for subsequent research. These are further described below, but the overarching perspective was that inclusion of public representation is critical to development and evaluation of services if they are to meet needs in an appropriate and accessible way. A ‘them’ and ‘us’ approach was challenged by PPI participants identifying as experts in their own right and also by recognition that partnership members, and service providers generally, are service users as well. Involvement of the RDS PPI panel shaped our planned involvement of the public in our follow-on proposal. They ensured we did not offer involvement which might be confusing, with participants thinking they would be getting personalised help, rather than attending partnership events.

Equality, diversity and inclusion

Building the partnership group involved extending membership to people with lived experience, organisations supporting underserved groups in the context of end-of-life care, and engaging organisations with varying, or no, experience in health service research. This led to a diverse group, revealing facilitators and barriers to partnership working, which are important in considering widely inclusive partnerships.

Facilitators of place-based multiagency research

Effective partnership engagement was facilitated by clarity in relation to the nature and purpose of the research and the nature and intention of the IPL. Language proved both a facilitator and barrier and the need for accessible, shared language was clear. Additionally, given the diversity of participants’ backgrounds, exploring opportunities for participants to utilise their strengths was important to engage members of the partnership and capitalise on diversity. Public participants encouraged the group to view them as experts and value them on equal terms. The group recognised the importance of an inclusive and mutually respectful culture within the partnership as a foundation for co-production. The partnership continues to evolve, facilitated through word of mouth across partnership members who share a commitment for appropriate representation, particularly in relation to underserved groups.

Providing multiple methods of participation, such as verbal and written feedback mechanisms, seemed to be beneficial, with participants engaging in both modes. Very few participants chose to submit their reflective workbooks. Although concrete conclusions cannot be drawn about the use of such workbooks for non-respondents, those that were returned can provide interesting insight. All respondents were from the PPI group, which perhaps indicates a difference in their availability to participate flexibly. Themes from workbooks mirrored those discussed in workshops, perhaps indicating that workbooks served a preparatory function or that PPI participants were more engaged in voicing their opinions when offered different options.

In terms of engagement with the research partnership, a shared commitment to meeting SWL needs more effectively was clear, but capacity constraints restricted engagement by some participants, notably clinicians who necessarily prioritised clinical activity and representatives of small VCS organisations, who articulated the need to justify involvement in research through allocated funding.

In terms of engagement with the IPL, pressures on healthcare staff were noted again. The importance of organisational endorsement and sponsorship at a senior level was emphasised as facilitators to engagement.

A structure for research provision

Much of the partnership discussion was focused on the ‘system’. As participation was so multiagency, the ‘systems’ in question needed some interpretation. From a previous NIHR Applied Research Collaboration funded programme in the same region, local stakeholders produced their versions of where they thought system boundaries were. While this was not assumed to be adopted by the partnership participants in this project, it gives an indication of the wide and varied place-based multiagency landscape of services that are being referred to. However, in addition to this service landscape, we expect that each participant may have a slightly varying definition of ‘system’, which is bespoke to their position relative to other services. In this respect, we can use the service landscape image as a proxy, but assume that ‘systems of interest’ are unique to each participant, in line with Jackson’s version of systems of interest: this is an articulation of a constructivist position on systems thinking. 34 Any system under discussion is essentially imagined (and therefore created) by the people in that conversation. Potential ways to navigate research capacity issues and facilitate involvement in ‘system-wide’ research were discussed, clarifying a partnership structure.

The partnership needs to allow various levels of participation (Figure 3), with some members being more instrumental in the design and delivery of the research (core research team) and those having less intensive involvement, but nevertheless valuable contributions via the wider participant group and steering group. Additionally, those with limited capacity might be called upon for specific contributions (associates) or indirectly support the research (instrumental friends) such as acting as a critical friend. The voice of lived experience was seen as significant in all layers of the research partnership.

FIGURE 3.

Structuring the research partnership.

Defining and evaluating success

Both process and impact evaluation of IPL were favoured, spanning multiple levels: public (patient/carer), individual professional learner and organisation. Attributing outcomes directly to the IPL intervention generated some challenges, particularly in relation to patient/carer impacts and health economic considerations.

Impact of IPL on professional learners was more straightforward, with measures around awareness, of both SWL needs and available services, and connectedness described. These identified measures are consistent with the extant literature on the value of IPL interventions. 11,12,18 In addition, participants described the capacity to reflect as being a meaningful measurement of the success of the IPL programme, reframing IPL as a continuous, iterative process of co-production rather than a static product. 13,14

Success of the IPL programme was also considered at the organisational level. However, this was more nuanced, and the Delphi technique failed to generate consensus around how this be evaluated. Organisations were seen to have differing, often conflicting, priorities, highlighting the difficulty of finding measures which would engage across the system. Given the backdrop of austerity and the importance of services being cost-effective for the NHS and social services, demonstrating value for money was often seen as important, which jarred slightly with some of the other outcomes identified.

Questions remain about the benefit and risk to organisations offering a more connected place-based response to SWL needs. There is potential to increase demand in some areas (e.g. VCS and advice services) while potentially reducing demand in others (e.g. unplanned health contacts). The exponential rise in unplanned hospitalisation towards end of life makes this an important consideration for future research. 35

Potential accreditation of IPL could raise credibility, but there was concern that this might move away from creating a collaborative learning culture, labelling IPL as a required task, rather than an approach to care. The importance of leadership engagement and endorsement of IPL was identified repeatedly as a route to validating the IPL approach and facilitating engagement.

Sustainable change at a system level was deemed important. However, there was some scepticism among participants around how achievable this might be, with a sense of frustration around the capacity for change.

Strengths and limitations

Although the research met its objectives, it was not without limitations. Attrition and flux within the partnership group were expected given capacity issues and this was indeed a feature of the research with variation in participation across the various elements of the project. There were strengths and limitations with this approach. The dynamic nature of the partnership group meant that a diverse range of perspectives were considered, and the group expanded over the duration of the research. However, this also meant that the depth of the discussion may have been hindered at times, with participants entering discussion at various levels of awareness about the project. The use of supplementary materials such as a video overview of the background of the research provided some mitigation.

Increased representation of underserved groups was achieved; however, this was by no means exhaustive. This project has catalysed an ongoing process of engagement through a shared commitment for inclusion and diversity across partnership members.

Also, inclusion of all the items in the Delphi technique was determined solely by expert consensus rather than empirical data. All panellists were required to be able to use/access the internet and e-mail and the patient panellists were not necessarily fully representative.

As this is a place-based study which is orientated to be highly contextualised, generalisability is not a concern for this approach. However, the use of developmental evaluation and systems of interest builds in a degree of default transferability such that any assembled group could adopt the approach detailed in the report and co-produce their own basis for partnership research. We expect our learning around convening a multiagency partnership, including a wide range of research experience from significant, to none, will provide insights for others looking to make research more inclusive.

Lessons learnt and next steps

This project sets the foundation for further partnership research. An inclusive, diverse and non-hierarchical partnership group is needed to drive change at the system level. Facilitators to engagement, including accessible language and payment for participation by small voluntary or community groups, will be incorporated into future research. PPI participation continues to impact positively on the research and inclusion in the partnership on equal terms has been appropriate and comfortable.

In addition to public representation, the influence of organisational leads has been recognised as necessary to endorse learning activity, facilitate access to staff and embed learning into standard practice. The inclusion of a multiagency leadership group in our next project will shed light on the impact of this in practice. This group will also build our understanding of the impact at organisational level of a more connected cross-agency system.

Learning from this project has informed a co-produced proposal for further NIHR funding. This will test feasibility, scalability and impact of IPL, through engagement with public, professionals and organisational leaders. We will continue to reach into local communities and increase representation of underserved groups. Filmmaking will be used to capture perspectives, telling the story of SWL needs around end-of-life and service connectedness from multiple perspectives. This will provide a powerful narrative to engage policy-makers and publicise the IPL, providing an evidence-based model for implementation at scale.

Contributions of authors

Colette Hawkins (https://orcid.org/0000-0003-1177-3319) Academic Consultant, Palliative Medicine. Co-led the study, contributed to the study design, convened the partnership group, supported delivery and analysis of project elements and helped draft the report.

Amy Wheatman (https://orcid.org/0009-0001-4613-0949) Senior Research Assistant. Supported data analysis and drafted the report.

David Black, PPI Co-applicant. Led the PPI work, advised on project design, attended workshops and helped draft the report.

Alexis Pala (https://orcid.org/0000-0001-8933-8283) Research Associate. Provided co-design expertise, co-led workshops, developed the workbooks, supported data analysis and reviewed the project report.

Yu Fu (https://orcid.org/0000-0003-4972-0626) Senior Research Associate. Led the Delphi technique and analysis, co-led workshops and helped draft the report.

Tomos Robinson (https://orcid.org/0000-0001-8695-9738) Research Fellow, Health Economics. Provided health economics expertise, attended workshops and reviewed the project report.

Jonathan Ling (https://orcid.org/0000-0003-2932-4474) Professor, Public Health. Provided public health expertise, attended workshops and reviewed the project report.

Sarah Gorman, NHSE Regional Social Prescribing Learning Co-ordinator and Community Partnership Lead, Edbert’s House. Provided VCS and social prescribing expertise and attended workshops.

Sarah Beardon (https://orcid.org/0000-0001-8716-6211), PhD Researcher. Provided social welfare research expertise, attended workshops and reviewed the project report.

Hazel Genn (https://orcid.org/0000-0002-0612-7649) Professor, Socio-Legal Studies. Provided social welfare law and policy expertise.

Hannah Hesselgreaves (https://orcid.org/0000-0002-6877-8199) Professor, Executive Education. Co-led the study, contributed to study design, led and co-ran the workshops, supported data analysis and helped draft the report.

Acknowledgements

With thanks to all our partnership colleagues for contributing time, experience and expertise to this project.

Data-sharing statement

All available data can be obtained from the corresponding author.

Ethics statement

Ethical approval was obtained from the ethics committee at Northumbria University (reference number: 44920; 6 March 2022). Prior to both workshops, participants were provided with information about the purpose of the workshop and an agenda for the session via e-mail and the workbook described above. Participant consent was sought via e-mail prior to all data collection methods.

Information governance statement

This project comprised a partnership group in order to co-produce a follow-on research proposal. Since this acted as a collaboration, there was no traditional participant recruitment and therefore no data protection consequences.

Disclosure of interests

Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/YGRA9852.

Primary conflicts of interest: The authors declare no conflicts of interest.

Department of Health and Social Care disclaimer

This publication presents independent research commissioned by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by the interviewees in this publication are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, MRC, NIHR Coordinating Centre, the HSDR programme or the Department of Health and Social Care.

Funding

This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135276.

About this article

The contractual start date for this research was in January 2022. This article began editorial review in May 2023 and was accepted for publication in February 2024. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The Health and Social Care Delivery Research editors and publisher have tried to ensure the accuracy of the authors’ article and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this article.

This article was published based on current knowledge at the time and date of publication. NIHR is committed to being inclusive and will continually monitor best practices and guidance in relation to terminology and language to ensure that we remain relevant to our stakeholders.

Copyright

Copyright © 2024 Hawkins et al. This work was produced by Hawkins et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution, the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.