Co-generating ideas for safer paediatric care with parents and stakeholders: a multi-method UK general practice study

Thomas Purchase; Harriet Quinn-Scoggins; Isobel J McFadzean; Lauren Donovan; Isabel Hope; Eleanor Clarke; Kate J Lifford; Imogen John; Nicholas Hodson; Jillian Beggs; Philippa Rees; Andrew Carson-Stevens

doi:10.3399/BJGP.2025.0690

Abstract

Background Parents play a vital role in protecting their children from healthcare-associated harms, for example, through mitigating safety incidents in general practice. Despite international calls encouraging family involvement in patient safety initiatives, parental perspectives are rarely embedded in the co-design of safety improvements.

Aim To co-generate and prioritise ideas for improving paediatric safety in general practice with parents and key stakeholders, and to explore areas of agreement and disagreement between these groups.

Design and setting A multi-method study combined qualitative methodology with quality improvement tools involving four parent workshops (between June and July 2024) and one stakeholder workshop (November 2024). Parent participants had experience of accessing general practice services with their children; and stakeholder participants included clinicians, managers, policymakers, primary care leaders and patient advocates.

Method Parent participants reviewed national-level safety incident data and used nominal group technique to generate ideas for change. Ideas were collated, refined and presented to key stakeholder participants, who assessed the potential ‘doability’ (can be acheived or performed) and impact of each idea.

Results Parents (n = 33) generated 16 ideas for change targeting communication, access to care records and results, and shared learning and development. Stakeholders (n = 7) prioritised seven ideas, including a campaign to support parents to speak up, having flexible appointments for children and designating a parent advocate. Parents and stakeholders most strongly agreed on the need to proactively seek parent feedback and solutions.

Conclusion Parents are willing and able to support healthcare teams with their patient safety efforts. Their ideas align with national priorities and offer actionable strategies that general practice teams can adopt or adapt for safer paediatric care in their own populations.

How this fits in

Research has highlighted the important role parents play in paediatric patient safety, for example, through mitigating safety incidents in general practice, yet their perspectives have rarely shaped system-level improvements. This study co-generated and prioritised ideas for change with parent participants and key stakeholders, identifying feasible and impactful strategies to improve paediatric safety in general practice. These strategies centred around practice communication, accessing care records and results, and fostering a culture of shared learning and development. Parents are willing and able to contribute meaningfully to safety improvement efforts, and their insights align with national patient safety priorities. Clinicians and policymakers can use these findings to strengthen collaboration with families, tailor safety interventions to local needs, and embed parent voices in the design of safer care systems.

Introduction

Children rely on their parents, guardians and informal caregivers (referred to as parents in the remainder of this article) to support them to access healthcare, ensure their needs are met, and act as their principal advocate.^1–4 This protective role taken on by parents has been argued to be an important part of healthcare system resilience, supporting the system to adapt and function in unpredictable circumstances.⁵ Clear advantages for patient safety have been evidenced when parents take an active role to mitigate safety incidents and harms both in the hospital setting^6–8 and within general practice.⁹

Parents want a healthcare system that works with them, valuing their voice, expertise and authority,¹⁰ and when presenting to primary care (for example with an unwell child), parents want to be acknowledged as competent collaborators with healthcare providers.¹¹ GPs have reported that a parental concern is a significant factor in shaping their ‘gut feeling’ when reviewing a child and that a worried parent should always be taken seriously.¹²

There is increasing recognition of the protective parental role within patient safety, and parents have successfully collaborated with healthcare professionals to provide valuable perspectives on how to improve paediatric safety and care,^13,14 with positive examples within primary care relating to safety-netting advice.^15,16 However, less has been done to seek parent perspectives on where to target improvement efforts across their child’s care journey within general practice, nor in co-generating ideas for change with them.

There have been several international calls for stronger collaborative partnerships with patients’ families to improve patient safety efforts,^17–19 particularly within research and the co-development of safety interventions.^20,21 The primary care patient safety strategy for NHS England encourages more active engagement of patients and families in the co-production of patient safety improvements.²² Despite this, current practice and culture within healthcare systems do not always support parental partnerships or incorporate the family experience.^4,23

In the present study, parents of children who received care in a general practice setting participated in a workshop to review the findings of a national-level analysis of safety incidents where parents mitigated or contributed to unsafe care outcomes.⁹ Those parents contextualised the findings, shared their own experiences of similar events and were then tasked with generating ideas for change within primary care that could tackle issues to support and improve paediatric patient safety efforts.

The study aimed to establish how feasible and impactful the parent-generated ideas could be, if implemented, through discussions with a group of key primary care stakeholders. A further aim was to explore any areas of agreement or disagreement between the parents and stakeholders.

Method

Study design

A multi-methods study was undertaken, combining qualitative methodology with quality improvement tools to co-generate and prioritise ideas for change to improve paediatric safety in general practice.

Conceptual basis of the study

To address the study objectives, the design aimed to enable a collaborative and inclusive co-production of ideas with parents based on their lived experiences, on where and how the primary care system, and in particular general practice, could be improved.^24,25

The present study also acknowledged that primary health care is a complex and dynamic system,²⁶ is highly personal and non-linear in nature,²⁷ and plays a central role in the coordination of patient care in the community and between specialties.²⁸ Learning from parents’ past lived experiences will help to understand how future services could be improved for children.

Parent workshops

Participant recruitment

Several recruitment streams were used to recruit participants to ensure a diverse selection of backgrounds, demographics and experiences of the parents involved (Supplementary Table S1). Throughout the recruitment process, the spread of parent demographics was regularly reviewed and where groups were under-represented, purposive sampling was employed to address this. For example, recruitment methods via social media advertisements over-represented responses from White women and subsequent focused email invites were sent to charities and organisations supporting under-served and ethnic minority groups.

An electronic or paper consent form was signed by all participants before taking part and an online voucher was offered for their time.

Workshop setting

A total of four workshops were conducted between 24 June and 8 July 2024. Two workshops took place in person and two remotely (via Zoom), to accommodate participant preferences and availability. The lead researcher (first author) worked with the study’s Patient and Public Involvement and Engagement (PPIE) parent co-applicant and community champions to optimise delivery (content and format) of the workshops.

The lead researcher also facilitated each workshop with support from other members of the research team (see Supplementary Table S2 for a workshop schedule example). A translator was present to support participants at one in-person workshop. Each workshop lasted approximately 2 hours and was audiorecorded. Recordings with acceptable sound quality were transcribed verbatim.

Data collection

At each workshop, following introductions from the team and an explanation of the research objectives of the workshop, safety incident report data were presented.⁹ The data described types of incidents where parents were commonly involved in either mitigating against or contributing to the incident being described within general practice. Examples of incident reports and the actions taken by parents to prevent harms from occurring were presented. This provided relevant context and a suitable foundation on which to begin subsequent group discussions and exercises.

Participants were placed into groups of no more than six, with a facilitator, and invited to share their initial reflections and own experiences in relation to the incident report data.

Participants were then asked to generate ideas for change in general practice, specific to paediatric patient safety. Employing nominal group technique (NGT)²⁹ participants were given time to themselves in silence to write down as many ideas, strategies or recommendations as they could to answer the question, ‘How do you think parents and staff can work together in general practice to make caring for children safer?’ Each idea was discussed in turn until all the ideas or time had run out. For the first two workshops, the individual ideas were collated, grouped into categories by the facilitators, and presented back to the whole group for comment. In the final two workshops, the ideas were presented in the form of a driver diagram for comment.

The design of the workshops, with the use of NGT, aimed to minimise facilitator influence on parent discussions and ideas generated, and the facilitator role was to purely encourage and enable further discussion between the parents, and to create field notes based on the discussions. This and any other concerns from the team were reflected on after each workshop to consider if any changes were needed for the subsequent workshop.

The facilitators documented key discussion points and participant ideas on sticky notes or the white board function on Zoom. Each facilitator separately summarised their field notes after each workshop. Workshop transcripts and field notes were collated, transferred to an electronic format, and uploaded to NVivo (version 12) to facilitate the analysis.

Data analysis – ideas for change

A driver diagram was iteratively developed, incorporating the discussion points, themes, priorities, and ideas for change generated from sequential workshops. A driver diagram is a quality improvement tool to visualise an improvement strategy for tackling a complex problem and was used in the workshops to help participants understand and appraise the ideas generated.³⁰

The driver diagram was created using data from Workshops 1 and 2 ( Figure 1). Participants in Workshops 3 and 4 were given the additional task of reviewing and sense checking the driver diagram before mapping their own ideas for change onto it. Here, the facilitators reviewed how well the parent-generated ideas aligned with the primary drivers (high level factors that help achieve the overall aim) or secondary drivers (ideas that help to achieve the primary drivers) and previous ideas for change. During Workshop 4, the majority of new change ideas and discussion points could be successfully amalgamated with previous parent ideas on the driver diagram, and, following team discussion, it was decided that data saturation had reached a level where an additional workshop would not contribute further meaningful insight.

Flow diagram of a research process across four parent workshops and a stakeholder sessionworkshop, showing cycles of reflection, ideas generation, data analysis and team discussions leading to development, iteration anda finalisationsed of a driver diagram and prioritised parent ideas..

Flow diagram illustrating a multi‑stage, iterative research and co‑design process involving four parent workshops and a stakeholder session workshop. The process begins with Workshop 1, which includes two activities: reflection and ideas generation. This is followed by an interim data analysis phase. In Workshop 2, participants again undertake reflection and ideas generation, informed by interim data analysis. Parallel Subsequent research team discussions take place, leading to the initial development of a driver diagram. Workshop 3 continues the iterative cycle with reflection, ideas generation, and an additional mapping exercise. Interim data analysis and research team discussions continue, resulting in further refinement and iteration of the driver diagram.In Workshop 4, participants repeat reflection, idea generation, and mapping activities. This stage contributes to further development of ideas and the finalisation of the driver diagram before engagement with a wider stakeholder group. A stakeholder workshop follows, where participants undertake reflection and prioritisation exercises. At this stage, interim data analysis and research team discussions continue, leading to finalisation of the driver diagram andDiscussions and activities during this stage lead to the prioritisation of key parent ideas. Overall, the diagram shows a structured, cyclical sequential process combining workshops, data analysis, and collaborative discussion to progressively develop, refine, and finalise a a driver diagram and a set of priorities and a driver diagramprioritised parent ideas.

Figure 1. Flow diagram of sequential parental workshops, steps for data analysis and driver diagram development, and stakeholder workshop tasks.

Key stakeholder workshop

The ideas generated and refined by parents and the research team over the four workshops were presented at a key stakeholder workshop of healthcare professionals, patient safety experts, policymakers and leaders. The aim of this workshop was to establish consensus on prioritising the parent-generated ideas for change in relation to how doable and impactful each idea would be if implemented in general practice to make paediatric care safer.

Participants

Participants were invited based on their experience, expertise and job roles in the fields of patient safety, general practice (clinical and managerial), primary care policy development, primary care research and education, and patient and parent advocacy, in keeping with approaches for prioritising primary health research.³¹ The aim was to include participants with a deep understanding of the primary care system and the challenges associated with implementing a change. Participants were invited via email and signed an electronic consent form before participating.

Workshop setting

A remote workshop took place via Zoom in November 2024. The workshop was facilitated by the lead researcher (first author) and supported by other members of the research team (n = 5). The workshop was audiorecorded, transcribed verbatim and lasted 1.5 hours.

Data collection

The participants were presented with the key findings from the incident report data (as per the parent workshop),⁹ the parent workshop methodology and the driver diagram with the parent-generated ideas for change. They were then asked to complete two tasks:

To consider the results presented, share their initial thoughts with the group and then rank the top five parent-generated ideas they wanted to discuss first.
The parent-generated ideas were presented individually in turn based on the participant rankings. Participants considered where each idea should be positioned on a prioritisation matrix (via a Zoom whiteboard, see Supplementary Figure S1) for doability and impact (see Box 1 for definitions provided). Once all ideas were positioned on the matrix the group reconsidered whether any positions should be adjusted and why.

View this table:

Box 1. Definitions of ‘doability’ and ‘impact’, which were considered during the stakeholder workshop

The ideas positioned wholly or in part in the top-right quadrant of the matrix, meaning the most doable and most impactful, were considered the priority ideas that could be taken forward.

The facilitators documented key discussion points and generated electronic summaries after the workshop. The workshop transcript and field notes were collated and transferred to an electronic format on Microsoft Word to facilitate synthesis and analysis.

Data analysis

All collated stakeholder workshop data (including the transcript, facilitator field notes and prioritisation matrix) were reviewed and categorised into the 16 parent-generated ideas, to enable a content analysis specific to each idea presented.³² The analysis consisted of creating short summaries of the key discussion points in relation to each idea, with a focus on the sentiments expressed by the stakeholders (for example, positive, neutral or negative); the level of detail in the discussion; and identification of the rationale to explain the final consensus decisions made.

These data were then compared with findings from the parent workshops (inclusive of a thematic analysis).³³ The coding framework created as part of the parent workshop thematic analysis was re-reviewed in conjunction with the finalised driver diagram to identify and code parent sentiments and key quotations in relation to each idea. This enabled comparison with the stakeholder data to highlight key areas of agreement or disagreement between the two groups.

Results

Parent workshops

The demographics of the 33 parent participants are outlined in Table 1. Most participants were female (n = 28, 84.8%), nearly three-quarters were aged 35–54 years (n = 24, 72.7%), most were of White (n = 13, 39. 4%) or Asian (n = 11, 33.3%) ethnicity, and over half were not currently in paid employment or ‘not specified’ (n = 17, 51.6%). Over one-third of participants felt their child had been involved in a healthcare-related safety incident (n = 12, 36.4%).

View this table:

Table 1. Parent workshop participant demographics, N = 33

A summary of total participants and facilitators in each workshop is provided in Supplementary Table S3. The experience and expertise of the workshop facilitators are described in Supplementary Table S4.

Co-generation of ideas for change

The NGT discussions and driver diagram mapping exercises generated 16 ideas for change. These included ways of facilitating effective communication, providing adequate support to navigate the system, and fostering a culture of shared learning and development (primary drivers, Figure 2). The full list of ideas is presented in Figure 2 and Box 2, and accompanying descriptions are provided in Box 2.

Driver diagram of parent ideas to improve child safety in general practice, targeting communication, system access and shared learning. Examples include flexible apointments, a designated parent advocate, and a campaign to support parents to speak up.

A driver diagram illustrating approaches to improve safety for children in general practice. The diagram is organised into key thematic areas with linked interventions.The first theme focuses on communication and relationships, including clear communication and active listening before, during and after appointments, cultural sensitivity, and strengthening parent–practice relationships. Suggested interventions include staff training on empathy, bias and communication, interpreter services, longer appointments for children, and clearly defined roles for parents and staff.The second theme addresses how the healthcare system works and how parents access care and information. This includes improving continuity of care, simplifying access to health records, enabling parents to track referrals and results, and introducing tools such as healthcare passports. Other interventions include allocating a consistent doctor, reserving appointments for children, and proactively offering follow‑up after hospital admission.The third theme relates to shared learning and development. This includes learning from safety events, supporting parental education, and encouraging feedback through advisory groups. Interventions include parent training sessions, systems for reporting and learning from safety events, and providing a designated contact for raising concerns or seeking advice.Overall, the diagram presents a structured set of system, communication and educational strategies aimed at improving collaboration between parents and healthcare staff to enhance child safety in general practice.

Figure 2. Driver diagram of the 16 parent-generated ideas, presented in the orange boxes on the right-hand side. Although horizontal dotted lines have been added to delineate the primary drivers (green boxes), there is overlap between the ideas and secondary drivers (blue boxes) on how the primary drivers may be achieved.

View this table:

Box 2. List of ideas for change generated by parents with descriptions

Stakeholder workshop

A total of seven stakeholder participants took part in the workshop. The experience and expertise of the stakeholder participants and facilitators are described in Box 3.

View this table:

Box 3. Stakeholder’s workshop participant and facilitator job roles and experience

Following group discussions and re-positioning of each idea on the priority matrix the stakeholders prioritised seven ideas (highlighted in bold in Box 2).

No ideas were rejected as not doable or with zero impact, but some ideas generated less interest and discussion: for example, creating a shared code of conduct between parents and healthcare providers.

Rich discussions around each idea often generated a level of disagreement between the stakeholders before settling on where to position the ideas within the matrix. Box 2 lists all the parent ideas for change and their descriptions. Please see Supplementary Table S5 for the full list of parent ideas alongside the associated stakeholder group considerations and key quotations (provided as smart verbatim).

Parent and stakeholder disparities

There were notable areas of disagreement between the parent and stakeholder workshops. Parents expressed strong views in multiple workshops relating to the appropriateness of receptionists triaging calls and allocating appointments, whereas stakeholders felt this was appropriate and ‘care coordinators’ were well trained for this role:

‘… receptionists, we call them care coordinators, they are really highly trained and the decisions they’re making aren’t their decisions, they’re the GP’s decision or the practice nurse’s decision, they’re following a protocol. (Participant 5 [P5])
‘It’s a case of whoever shouts loudest, not based on clinical need.’ (Parent workshop 1 [W1] , female [F])

Parents felt that a co-created shared code of conduct was a good solution to alleviate some burden and pressure from both parents and healthcare professionals by expressly agreeing on each person’s roles and responsibilities. However, this idea was met with little enthusiasm by stakeholders, with no strong opinions advising where it should be placed on the priority matrix.

Parent workshops expressed some difficulties booking appointments for their children, which led to the idea of allocating ‘child appointments’ or allowing more flexibility. Stakeholders, however, clearly felt children are rarely unable to access GP appointments, perhaps not viewing this as a problem:

‘I think we do tend to show slightly more concern for the little ones … we would never turn down an appointment for a child.’ (P1)

Parent and stakeholder concordance

Parents and stakeholder participants strongly agreed that healthcare providers need to work more collaboratively with parents and take parents’ voices seriously, illustrated through ‘asking parents for solutions and feedback’ being considered the most impactful idea:

‘It’s really important that we … are encouraging people, the clusters, to have a needs assessment for their community, and that’s not just about how many people we’ve got with cardiovascular disease. It’s also what significant events have we seen, you know, what incidents have we seen, what’s working well, what does that tell us about what we need to do with our systems, and then you’d have a plan for your community.’ (P7)

Parents and stakeholders agreed on the idea that healthcare providers should change their perspective on parents speaking up, and not to view it as ‘criticism’ or ‘hindrance’:

‘We have to empower patients and their families, carers etc. to be more active partners but we as healthcare professionals must learn to embrace this and not see curious patients/families as a hindrance.’ (P5)
‘We need to promote the fact that parent’s intuition or parents speaking up is not a criticism of the service.’ (W1, F)

Finally, a few ideas were thought to already exist (for example, relating to learning and reporting systems and how parents raise concerns), suggesting a disconnect between how practices learn or raise concerns and parents’ awareness or understanding of these areas. Though the specific ideas generated perhaps progressed these existing processes further, suggesting how they could be improved. The need to rectify these disparities was noted within the stakeholder workshop:

‘A lot of this, I think, is about how we’re not working sufficiently in partnership with parents and children.’ (P4)
‘Something that really strikes me here is just that disconnect and misunderstanding of roles and things that we’ve got in place, and just that need to work together to get better.’ (P7)

Discussion

Summary

Parents generated a broad range of ideas to improve paediatric safety in general practice, focusing on practice communication, accessing care records and results, and fostering a culture of shared learning and development. Key stakeholders working in clinical and managerial roles, policy development, and advocacy corroborated several of these ideas as both doable and impactful. Parents and stakeholders most strongly agreed around the need to actively ask parents for feedback and solutions when designing any system change to ensure safer care for children within general practice.

Parents demonstrated that they both can and want to be involved in these processes and are able to generate feasible ideas based on their lived experience, a crucial step in the co-production cycle to co-decide on and co-design a system change.²⁵

Strengths and limitations

The use of NGT activities meant the ideas generated by parents were not influenced by the research team. The use of quality improvement tools provided a structured method to organise the ideas in an accessible way, allowing for rich group discussions and drawing comparisons between the ideas.

Half of the parent participants were not in paid employment or ‘not specified’. However, given the voices of children are often represented by the most advantaged in society,³⁴ this skew by those not in paid employment may serve to capture the otherwise less heard voices on this topic, with the ideas generated serving to support their particular needs.

Some important voices are missing from the data, for example, parents with disabilities or chronic conditions, those experiencing homelessness, and voices from Gypsy, Roma and Traveller communities. Additionally, no children were included in this study. Further efforts are being made in current projects to capture these perspectives.

The stakeholder group brought a diverse wealth of experience relating to this topic. The group included those in positions of influence within primary care leadership and policy development, and frontline workers. Despite several participants having senior or managerial roles, the research team did not observe any issues or identify any concerns regarding power dynamics or overly dominant individuals during the workshop. Several parent-generated ideas were prioritised by the stakeholders, which supports their credibility and applicability on a wider scale. This study has also highlighted tensions between parents and stakeholders perspectives over what changes are needed to make paediatric care safer.

Several stakeholder participants were based within Wales, meaning the experiences through which they assessed and prioritised each idea could have been influenced by the care system in Wales. While there are some funding and infrastructure differences between Wales and the other UK nations, from a parent and patient perspective primary care systems operate in broadly similar ways and no discussions were considered to be too specific to Wales. Additionally, several concepts, for example seeking parent feedback and greater collaboration with parents, could be scalable and applicable internationally.^18,19

Our prioritisation exercise during the stakeholder workshop was time limited. Had more time and in-person interaction been available, it is possible some ideas would have been re-positioned further on the priority matrix.

Comparison with existing literature

Many of the ideas generated by parents align with key areas within the NHS primary care patient safety strategy,²² particularly around the need for healthcare providers to engage with new reporting and learning systems for patient safety incidents (for example, the Learn From Patient Safety Events [LFPSE] service and the Patient Safety Incident Response Framework [PSIRF]).^35,36 Successfully utilising such systems might help address the stakeholder concerns around the feasibility of collecting these data in general practice. The strategy also highlights that lay patient safety partners should be identified to work alongside staff to improve safety governance and leadership. These patient safety partners could be well placed to address healthcare inequalities by speaking up for disadvantaged communities who experience disproportionate levels of healthcare-associated harm.³⁷

Other parent-generated ideas may help address healthcare inequalities by targeting common barriers faced by those experiencing poorer health outcomes. These include a lack of communication from care services, feelings of powerlessness, not being listened to, and inflexible service provision.³⁸ Similarly, several parent ideas aiming to support cultural sensitivity, improve the parent–healthcare provider relationship, and enable clearer communication, have been identified as important precursors to parental empowerment and could therefore enhance parent advocacy efforts.³⁹

The parent-generated ideas for change may also address comments previously made by patients when asked about primary care patient safety, including the importance of shared and accessible patient information,⁴⁰ the possible benefits of patient education,⁴⁰ and concerns raised that not all administrative staff have the skill set to prioritise patients.^41,42

The ‘disconnect’ identified between parents and stakeholders in relation to this last example perhaps reflects how blind spots or misunderstandings arise from variability between GP practices. Some trained reception staff act as ‘care coordinators’, while others describe anxiety related to such clinical tasks, particularly when making decisions about allocating appointments, with many receptionists operating without adequate training in this area.⁴² It may therefore be understandable that parents and stakeholders hold differing views based on their locality and experience. Ban et al cautioned on relying on over-stretched individual practices to shoulder the responsibility of individually working out how best to achieve developments in this area and questions the role of policymakers and leaders in the collective development and testing of new ways of working.⁴²

Steps are being taken to address some parent ideas at an organisational or policy level. For example, access to online records (including test results) has been rolled out across England via the NHS app or NHS website.⁴³ However, this is not yet the case across all UK nations, with ongoing research exploring how blood results, for example, are best communicated with patients.⁴⁴

Implications for research and practice

Ideas for change generated by parents and prioritised by stakeholders can be considered a starting point for practices and healthcare organisations to implement change in their own localities. However, primary care presents a complex and heterogenous landscape, working across a wide range of teams and services and often undergoing structural reform.^45,46 To operationalise the most suitable ideas, therefore, primary care providers could explore which ideas resonate with their own populations and adapt them to meet their community’s needs. Alternatively, teams could replicate our methods to co-generate personalised and targeted change tailored to their population.

The presented ideas aim to address multiple interacting system elements within general practice, targeting change that could influence person-level factors (relating to the parents, children, healthcare professionals) up to organisational-level redesign (relating to resources, management and infrastructure). Co-generating ideas with parents supports the benefits of incorporating the parent voice to better align with the principles of Human Factors and Ergonomics, and highlights the value of user experience in guiding and shaping meaningful improvements.⁴⁷ Therefore, selecting a suite of suggested ideas to implement, rather than focusing on one component, will better account for the interacting relationships between the people and other elements of the system, from which safety performance and other outcomes in complex systems emerge.²⁶

Parent ideas considered to be less doable but still impactful, such as improving reporting and learning from patient safety incidents, highlight key areas that may not improve safety efforts in the short term, but with dedicated resources and support from policymakers could make a considerable change to future practice.

Parents are willing and able to support healthcare teams to develop ideas for change to redesign care systems to improve paediatric safety.

Primary care services should proactively seek out and involve the parent voice, exploring and addressing their concerns and responding to their feedback to address the ‘disconnect and misunderstanding’ in current and future safety efforts. Embedding parent perspectives into the design and delivery of paediatric care in general practice is not only a matter of equity but a necessary step toward safer, more responsive healthcare systems.

The following suggestions provide some examples of actions that practices could take that are low cost and do not require additional resources, while integrating parent ideas with stakeholder feedback:

Displays to encourage parents to speak up and feedback: posters, waiting room screen displays, or notices could be created to encourage parents to speak up if concerned or provide feedback that is separate from complaints procedures.
Practice consensus on documenting concerns and how to communicate results, referrals and updates: practice teams could agree an approach to record parental concerns in case notes as well as review and develop procedures to ensure clear and consistent communication with parents around when and how results and referrals will be handled. This may include agreed statements on timeframes, designated points of contact or the use of existing systems (such as the NHS App).
Seek parent input as part of routine practice safety work: parents could be invited to share ideas or solutions in small group discussions or complete short surveys to address specific practice needs, including involvement during paediatric-focused quality improvement projects or during significant event analysis.

Further work to understand how best to incorporate the parent voice in intervention development to mitigate paediatric healthcare-associated harm will help to combine the expertise of parents and healthcare professionals and foster collaborative partnerships to achieve the best outcomes for paediatric patients.⁴⁸ This may include utilising or moving beyond Patient Participation Groups (PPGs),⁴⁹ already created in some practices, to engaging the wider practice population and gathering their insights and ideas through a community needs assessment. As mentioned within the stakeholder workshop however, setting up these groups can take considerable time and resources. Capturing parent feedback and ideas might therefore be more feasibly gathered using lower resource alternatives, such as surveys (for example, via text message systems) or ad hoc targeted discussions with a smaller group of parents based on safety concerns specific to individual practices. Organisations should acknowledge that not all ideas will be acceptable or feasible to implement but could be meaningfully considered and adopted or adapted for practice.

Notes

Funding

This project is funded by the Scientific Foundation Board of the Royal College of General Practitioners (grant number: SFB 2022- 12). Dr Thomas Purchase, Dr Harriet Quinn-Scoggins, Dr Isobel Joy McFadzean, Dr Kate Lifford, Dr Imogen John and Prof Andrew Carson-Stevens are supported by Health and Care Research Wales as part of the Wales Centre for Primary and Emergency Care Research (PRIME Centre Wales, reference number: 526457).

Ethical approval

This study has been approved by Cardiff University Research Ethics Committee

(School Research Ethics Committee reference number: SMREC 24/06).

Provenance

Freely submitted; externally peer reviewed.

Data availability

All data generated or analysed during this study can be made available from the authors on reasonable request.

Acknowledgements

The authors would like to acknowledge the support of Health and Care Research Wales for their assistance with the recruitment of parent workshop participants. They are grateful for the support of Women Connect First, who kindly assisted with recruiting parent workshop participants and accommodated a workshop at their Cardiff premises.

An oral presentation was given at the RCGP Annual Conference 2025 (Newport, 9 to 10 October 2025).

Competing interests

The authors have declared no competing interests.

Received October 23, 2025.
Revision received February 24, 2026.
Accepted March 11, 2026.

http://creativecommons.org/licenses/by/4.0/

This article is Open Access: CC BY 4.0 licence (http://creativecommons.org/licenses/by/4.0/).

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Popert UW,
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Tong A
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Co-generating ideas for safer paediatric care with parents and stakeholders: a multi-method UK general practice study

Abstract

How this fits in

Introduction

Method

Study design

Conceptual basis of the study

Parent workshops

Participant recruitment

Workshop setting

Data collection

Data analysis – ideas for change

Key stakeholder workshop

Participants

Workshop setting

Data collection

Data analysis

Results

Parent workshops

Co-generation of ideas for change

Stakeholder workshop

Parent and stakeholder disparities

Parent and stakeholder concordance

Discussion

Summary

Strengths and limitations

Comparison with existing literature

Implications for research and practice

Notes

Funding

Ethical approval

Provenance

Data availability

Acknowledgements

Competing interests

References

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