Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches

Abstract Background Consumer engagement in health care is recognized as a critical strategy to minimize healthcare‐associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14–25 years) to improve their healthcare safety, with a focus on cancer care. Methods Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. Results Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being ‘looked after’ to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. Conclusion For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. Patient or Public Contribution Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.


| INTRODUCTION
Patient and carer engagement in health care is positioned by health agencies internationally as a critical strategy to improve the safety of patient care. 1,2 Patient safety can be described as the absence of preventable harm to the patient during the process of health care, and/ or the reduction of risk or unnecessary harm associated with the care delivery process. 3 Involving patients and carers in providing information, identifying concerns and detecting mistakes are some of the strategies that have been associated with reducing preventable harm. 4 Engagement can also occur at the service and system level, by drawing upon patients and/or carers in establishing mechanisms to advance clinical governance to build safer systems and services of care. 5,6 Through using a broad range of methods, patient engagement occurs on a spectrum from consultation through to collaboration and partnership at the point of care through to policy making. 7 There is a growing body of evidence about the use and effectiveness of patient engagement strategies to improve the safety of care for adults, with a recent review establishing the benefit of collaborative strategy development, user-friendly design, proactivity and agency sponsorship. [8][9][10] Less is known about the suitability and relevance of current patient engagement strategies with young people. 11,12 The suitability and relevance of patient engagement strategies for use with young people are increasingly pertinent in the context of a growing understanding of the distinctive needs of young people accessing health services. Considerations regarding engagement are particularly relevant for young people with chronic, complex or ongoing conditions such as cancer, 13 in which treatments are often complex, and ongoing and involve decision-making between various practitioners or services. 14 Reliance on support networks for guidance about health-related decisions and care has been recognized as integral, particularly in chronic conditions, and the level of support preferred by young people varies. 15 For example, in cancer care, young people have identified family engagement in planning, decision making and day-to-day care as vital. 15 There is also increasing awareness of the need for greater emphasis on improving the health literacy of young people experiencing cancer to improve outcomes. 16 Varied definitions of the age range described as a young person, adolescent or young adults in research and health services also have implications for decision-making and care processes, including engagement in discussions about safety issues. 17 In this article, we have used the term 'young people' to describe adolescents and young adults aged 14-25 years.
We sought to address the evidence gap around the suitability and relevance of current patient engagement strategies with young people through an analysis with young people and their service providers in cancer services across Australia. Our enquiry addressed the following questions:

| Design
We used a qualitative research design using online workshops.

| Setting
Young people using cancer services along with cancer service providers across Australia were accessed via Canteen, a national cancer support organization providing support services to young people aged 12-25 years who have had a cancer diagnosis or experienced cancer in their family. 18

| Sample
Eligible participants were either young people aged 14-25 years who had accessed cancer support services through Canteen Australia or providers of cancer support services for young people employed by Canteen. The minimum age of 14 for young people was set based on ethical requirements regarding the provision of consent to participate. Additional eligibility criteria were being able to communicate in English and having access to a computer or smartphone with internet connectivity for online participation. Participation of young people who identify as culturally diverse was encouraged, but not essential criteria.
Eligibility to participate was assessed by Canteen service providers and the research team. Based on recommendations for workshop research, we aimed to recruit between five and seven participants for each workshop. 19 We opted to conduct two online workshops for staff and two for young people.

| Recruitment
Canteen promoted the research project to young people consumers via Canteen's online platform and social media channels, including Facebook and Twitter. Canteen service providers also identified eligible young people. Young people indicated their interest in participating by contacting the Canteen research team directly using the contact details on the recruitment invitation and were then sent an email with the Participant Information Sheet and Consent Form.
Participants were allocated to an online workshop according to their availability. Young people consumers and health service providers were allocated to separate workshops to facilitate ease of discussion given the potential for young people and service provider participants to have had a prior relationship via Canteen. All young people eligible to access Canteen were invited to participate, however, only young people who had experienced a diagnosis of cancer chose to take part.

| Topic guide
The topic guide was developed by the research team (B. N., K. J., R. H., F. E. J. M. and P. P.) and reflected the content of a wider project exploring patient engagement with regard to improving safety in cancer settings for ethnic minority consumers. 10 Workshop content, including case studies, was reviewed by the Research Team and Consumer Advisory Group and adaptations were made. In addition, minor adaptations were made to frame the discussion around the concept of the suitability of engagement strategies for young people using cancer services in consultation with a partner agency with extensive experience in cancer support. The topic guide included introductions, a discussion of three case studies that exemplified the current modes and practices used to engage about safety in health care before concluding with the next steps for the research project and contact details for relevant support services. A summary has been included in Supporting Information: File 1 (Workshop topic guide).

| Data collection procedure
Before the workshops, participants were emailed a one-page document, which contained information about the topic schedule so that participants could be prepared for the discussion. Participants were invited to ask any questions and to identify if they had any accessibility requirements to facilitate their participation by contacting the research team. Following receipt of written consent, data collection occurred via online workshops using Zoom conferencing software, which were co-facilitated by two members of the research team (B. N. and K. J.) and were 90 min duration. Participants were able to join using audio only or video conferencing according to their preference. and P. P.). In Stage 4, the research team reviewed and refined the themes until finalized. The concept of integrative themes has been adopted from the template analysis approach 21 and used to explore data.

| RESULTS
Four online workshops were conducted, two groups were for service providers who support young people experiencing cancer (n = 12) and two groups were attended by young people (n = 6). The young people who attended were from diverse cultural backgrounds and aged between 16 and 25. All young people participating had experienced a diagnosis of cancer and undertaken treatment in Australian health services. Thematic analysis against the analytic framework led to the development of four themes that are described as principles for engagement with young people: empowerment, transparency, participatory culture and flexibility ( Figure 1).

| Empowering young people to raise concerns
Workshop participants articulated that the health service environment often impacted the confidence of young people accessing care. Staff members also explained the need to support young people to raise issues, both in describing the processes to raise a concern and providing relevant support, as illustrated in the following quotes: The thing is that just because someone has an issue or difficulty speaking up or raising something, doesn't mean they don't want the empowerment. It just means they don't know how to go about it. (staff member #W1P1S) I think just because a young person is being told not to be afraid to raise an issue, that doesn't mean they're not going to be afraid to raise an issue. (staff member

#W1P4S)
Participants articulated numerous practical strategies to support empowerment, including opportunities to ask questions about how to raise concerns, and time to think through issues and discuss with supporters. Participants agreed that often the most significant impact on the empowerment of young people is their relationship with the person who is delivering the invitation to engage: …bringing it back to that power imbalance of who is the health professional that goes through it with them and whether there is actual trust there in receiving the message that they're trying to give. Otherwise I think it sort of leads towards tokenistic empowerment.

| Transparent processes in health services
Several staff participants spoke about transparency and clarity in health system processes, seeing these principles as fostering trust F I G U R E 1 Principles for engagement with young people in health care between practitioners and young people. Participants said that strategies such as ensuring young people know they can be present for care-related discussions and can access their notes if they choose to have the potential to increase young peoples' knowledge of health service processes and their likelihood of engagement. Participants spoke about the importance of young people knowing what is 'normal' to enable them to know when to raise a concern. This related to treatment issues, such as infection symptoms or side effects, as well as healthcare systems or processes, such as admission procedures or complaints processes. One staff member commented; Young people also commented that consistent staffing with good rapport makes it easier to feel like there is a forum to raise concerns, especially if this contact can be across inpatient and outpatient stays. Flexibility and resources to enable health practitioners to communicate with parents directly when appropriate were also emphasized by participants. This was particularly significant for one young person who spoke about the challenge of translating complex information about her own chemotherapy treatment for her parent.
The young person valued the support of her parent and found that having translated information provided by healthcare providers and discussing directly with her parent was a valuable approach.
Communicating directly with her parent enabled her parent to understand the treatment, expectations and side effects to support her care away from the hospital setting. Other participants highlighted the need for flexibility to adapt expectations in line with culturally appropriate practices. This was particularly highlighted in relation to person-centred planning and empowerment focussed strategies. One participant commented: 'to me this is sort of saying, your role to be an empowered person is to ask questions and speak up whether it's comfortable for you or not. But that's justyeah' (staff member #W2P3S).

| TRANSITION
Research participants said that for young people, inhabiting the transitional period between childhood and adult had a significant impact on engagement about health and more specifically, health safety. This phase of transition impacted the messaging of engagement as well as the mode (how it was delivered). One participant captured the nature of the transition period and the need to tailor engagement accordingly: It's a much bigger issue. You can't change the fact that young people are often treated either as children or as adults and that they're not really seen as a separate cohort, where they very much are developmentally.

But I think you just have to try and make it
[engagement about safety] as focused towards them as you possibly can and then hope that that will work.
Because yeah, I think they definitely still want to be empowered and given the option. (young person #W1P4YP) The four principles outlined above were all impacted by the experience of transition for young people from being 'looked after' by parents or carers to being responsible for their own care, this was a theme which intersected all elements of the framework. We, therefore, considered 'transition' an intersectional or integrative theme. 21 Within this integrative theme were two subthemes of 'relationships of support' and 'navigating adult healthcare services'. The participants universally agreed that obtaining health or treatment information was important to inform young people what to expect in relation to activities such as health service processes or treatment plans. This knowledge was seen as vital to enable young people to know whether service access or treatment is progressing as expected and to identify potential safety events, however, access to such information was at times compromised. Several participants said that healthcare providers often address parents, one Staff member

| Navigating adult healthcare services
Participants identified that the move from paediatric to adult health services significantly impacted engagement between many young people and health services, including safety-related issues. Staff said that for agencies working across Australian state boundaries the differing age of consent across Australia makes clear expectations about rights and responsibilities difficult in formal consent or decision-making processes. This inconsistency was seen to compound assumptions and expectations of healthcare providers and families about opportunities for young people to be involved in decision-making and engagement, including engagement about safety. Participants identified that for many young people an adult hospital is a new, unfamiliar and overwhelming system to access, and navigation support was critical.
Participants at all workshops discussed that it is difficult for many young people to initiate conversations with adult health practitioners.
Discussion at one workshop for young people centred around the importance of consistent relationships. One young person relayed her experience with a nurse who she was able to contact while in the hospital and when at home. This relationship provided valuable opportunities for the young person to clarify treatment, and side effects and raise issues of concern. Another young person discussed the use of humour within these familiar relationships to raise uncomfortable issues such as hygiene or handwashing practices.  26 Establishing collaborative, consistent relationships is particularly important for young people experiencing chronic conditions such as cancer. 27,28 Principles established in existing work could be useful to guide more inclusive strategies and approaches to engagement about safety. 25,26 The benefit of digital technologies to foster ongoing connection was identified in our study reinforcing this is an area for further investigation. 29 The responsibility of service providers to develop relationships with young people to tailor communication in cancer care has been highlighted, 27 as having the benefits of establishing a consistent point of contact within the healthcare service for young people to access between appointments through interventions such as cancer navigators. 24 Collaborative research is required to increase understanding about the strategies that may be effective to facilitate engagement, and how young people can be equipped to raise safety issues. Improving health literacy to enable consumers to identify is a vital component in empowering consumers, including young people, to raise concerns about safety or questions about treatment. 16,30,31 Empowerment has been recognized as a foundation for partnership 32 and the use of empowerment tools has increased significantly within health care internationally over recent decades, for example, in relation to specific issues such as infection control, 33-35 medication 36 or in interactions in activities such as rounds or service planning. [37][38][39] A recent review conducted by Halvorsen et al. 40 concluded that to genuinely empower, or transfer power, and enhance the confidence of health service users to engage or raise issues is challenging. Genuine inclusive empowerment requires a nuanced, tailored approach, and this has been noted in opportunities to contribute to safety. 41  Opportunities for young people to engage in safety at direct care and service systems or governance levels, are required across both paediatric and adult health services and need to be inclusive of diverse and minority populations. 8,43 Partnership and co-production of resources and strategies requires organizational commitment, including policy support and staff education, to create an environment which supports recognition of consumer opinions. 12,44 There is a growing call for recognition of the needs of young people in service development and governance, and opportunities for leadership to foster young people to be heard. 13