Advancing consumer engagement: Supporting, developing and empowering youth leadership in cancer care

Healthcare reform increasingly stresses the importance of consumer engagement in promoting public health and improving healthcare systems (Carman et al., 2013; Herrin et al., 2016; Ocloo & Matthews, 2016). However, existing initiatives typically focus on individuals’ involvement in their own care (Herrin et al., 2016) and engage consumers through consultation rather than collaboration, limiting their ability to influence higher-level decision-making, policy and practice (Ocloo & Matthews, 2016). Moreover, these initiatives underrepresent those already marginalised from healthcare systems (e.g., by age, class, ethnicity; Ocloo & Matthews, 2016) and the growing movement to involve patients in the organisation and delivery of cancer care has largely neglected young people in particular. A meaningful commitment to consumer engagement must look beyond actively involving young people in their own care and begin to engage them in shaping the systems and organisations that serve them.

Engaging young people as leaders offers reciprocal and synergistic benefits for both individuals and organizations. Young people can explore their identities, expand their abilities and self-efficacy, connect with their communities and experience governance processes through leadership (Zeldin, 2004; Zeldin, Christens, & Powers, 2013). These experiences foster personal development, and the skills and experience gained are often relevant beyond the immediate healthcare setting. For example, developing leadership skills and leveraging social networks may also create opportunities for later employment (Zeldin, 2004). This is particularly important for young people with cancer, who often miss opportunities for personal, educational, vocational and psychosocial development due to cancer-related events such as hospitalisation or extended absences from school/work.

Additionally, engaging young people in leadership and governance can contribute to reductions in health disparities, increases in the likelihood that health services are responsive to users’ needs, and improvements in quality, patient safety age-appropriateness and cost-effectiveness (Carman et al., 2013; Suleiman, Soleimanpour, & London, 2006). Beyond the potential to improve health programmes, the meaningful involvement of youth in organisational governance is a democratic imperative (Patton et al., 2016; United Nations, 1989). Recognising young people as competent citizens with the capacity to contribute to organisational operations, rather than passive beneficiaries of their services, is fundamental to the development of youth participation initiatives which positively impact the individuals, services and communities involved (Checkoway, 2011; Patton et al., 2016; Suleiman et al., 2006).

Despite these benefits, the engagement of young consumers in leadership within cancer care has been limited, and best practices for engaging and supporting young leaders in healthcare remain unclear. One of the few instructive examples of youth leadership in cancer care can be seen in the Australian organisation CanTeen, which provides information and support (counseling, psychosocial, recreational and peer) to adolescents and young adults (AYAs; 12–25 years) living with their own or a family member's cancer. Through the Youth Cancer Services (YCS), the organisation also provides young cancer patients specialised treatment and support services based in major hospitals throughout Australia. CanTeen was founded in partnership with young people and continues to engage young people at all levels of governance and leadership. The organisation's constitution ensures young people comprise the majority of the Board of Directors, including the Chair role. CanTeen also engages young people in local and national advisory groups, as well as peer mentoring, programme facilitation, research and advocacy roles. Youth leadership is central to the organisation's ethos: it is articulated in strategic and operational plans, and is a core part of the organisational mission, values and culture, ensuring relevance and effectiveness in working with young people.

Sharing expertise in engaging young leaders is crucial to establishing best practices. In 2016, CanTeen partnered with clinicians at MultiCare Health System in the United States to support the creation of an AYA oncology council to inform the development of cancer services for young people in Washington State and co-develop AYA cancer research (Pflugeisen et al., 2018). This collaboration adds to the small but growing body of work on youth leadership in cancer care, expanding our understanding of how best to create space and support for young people to take up leadership.

Another example of youth leadership in cancer care is the Australian YCS programme, which is managed by CanTeen. The programme aims to provide specialised age-appropriate medical, nursing and psychosocial care to all 15–25 year olds diagnosed with cancer in Australia. The YCS consists of five lead sites based in different states, working collaboratively with over 25 hospitals nationally. Site-specific and national Youth Advisory Groups inform governance, planning and programme delivery “to ensure that young people with cancer and their families are engaged and have a ‘seat at the table’ in all key stages of planning and implementing policy, research and service delivery” (CanTeen Australia, 2017a). The National Youth Advisory Group also meets quarterly to discuss local and national issues and engage in key projects (for example, the co-development of the Getting Cancer Young online resource: bit.ly/GettingCancerYoung). The Chair of the national group is also a member of the overarching YCS Strategic Advisory Group which guides the YCS initiative at a national level, contributing alongside experts in clinical care, policy, advocacy and research.

Young people need appropriate support and scaffolding, including training, coaching and orientation to governance processes, to engage effectively with leadership, policy and planning in cancer care. Models of both leadership and consumer engagement tend to categorise initiatives according to their levels of involvement, placing higher value on greater involvement although this may not be appropriate for all individuals and situations (Carman et al., 2013; Kirby & Gibbs, 2006). Initiatives engaging young service users should consider their variable skills, interests, psychosocial and developmental needs, and preferences for involvement, especially when seeking to improve leadership inclusivity and diversity (Checkoway, 2011; Kirby & Gibbs, 2006).

A suite of training programmes is offered to support young people in taking up leadership roles in the organisation. The programmes cover both broad leadership skills and role-specific training (e.g. advocacy, media, mentoring, public speaking, programme facilitation), and are manualised enabling consistency, model fidelity and robust evaluation.

Evaluating consumer engagement in healthcare is crucial to determine whether initiatives are effective, and to identify elements that are critical to their success. To date literature in the field has been largely descriptive, with organisational case studies capturing the complexities of implementation but rarely presenting generalisable findings (Jacobs, Brindis, Hughes, Kennedy, & Schmidt, 2017; Ocloo & Matthews, 2016). The lack of specific and standardised instruments assessing consumer engagement in organisational design and governance makes it particularly difficult to evaluate the strength of available evidence and compare findings across studies or settings. As the field evolves, the development and validation of measures of consumer engagement (especially at organisational and policy levels) will be vital in establishing a rigorous evidence-base for developing and evaluating subsequent youth leadership initiatives. Another important consideration is the economic evaluation of these initiatives (Levitan et al., 2018).

Young people have the capacity to make a difference at all stages of healthcare, from direct care to service planning and policy. However, their involvement in leadership relies on those in power providing platforms and support to engage them appropriately (Patton et al., 2016). Leadership initiatives targeting young people have been slow to emerge, with best practices still evolving and better measurement of engagement and its outcomes needed (Jacobs et al., 2017). Continued international efforts to share insights into engaging young leaders in cancer care, improve youth engagement models and develop evaluation methods will crucially strengthen best practices in supporting, developing and empowering young people with cancer in this area.

CONFLICT OF INTEREST

The authors have no conflict of interests to declare.