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

Patterson, Pandora; Allison, Kimberley R.; Hornyak, Natalie; Woodward, Kathryn; Johnson, Rebecca H.; Walczak, Adam

doi:10.1111/ecc.12958

Cited by 7 publications

(6 citation statements)

References 12 publications

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“…On the other hand, such practices may also be the first step toward greater participation of adolescents in policy development as nations recognize the importance of end user engagement in policy making. Despite the emphasis on consumer engagement in policies and guidelines developed for adolescents [ 63 , 64 ], adolescents are yet to be recognised as fundamental stakeholders despite their unique insight which many policy and guideline development processes require [ 65 ]. Furthermore, our review determined that when engaged within obesity and chronic disease prevention policy and guideline development processes, participation is superficial in nature.…”

Section: Discussionmentioning

confidence: 99%

How are adolescents engaged in obesity and chronic disease prevention policy and guideline development? A scoping review

Mandoh

Redfern

Mihrshahi

et al. 2023

glob health res policy

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Background Adolescent consumer engagement is widely accepted, with global calls to meaningfully involve adolescents for effective and tailored policy and guideline development. However, it is still unclear if and how adolescents are engaged. The aim of this review was to determine if and how adolescents meaningfully participate in policy and guideline development for obesity and chronic disease prevention. Methods A scoping review was conducted guided by the Arksey and O’Malley six stage framework. Official government websites for Australia, Canada, United Kingdom, and United States including intergovernmental organizations (World Health Organisation and United Nations) were examined. Universal databases Tripdatabase and Google advanced search were also searched. Current and published international and national obesity or chronic disease prevention policies, guidelines, strategies, or frameworks that engaged adolescents aged 10–24 years in meaningful decision-making during the development process were included. The Lansdown-UNICEF conceptual framework was used to define mode of participation. Results Nine policies and guidelines (n = 5 national, n = 4 international) engaged adolescents in a meaningful capacity, all focused on improving ‘health and well-being’. Demographic characteristics were poorly reported, still most ensured representation from disadvantaged groups. Adolescents were primarily engaged in consultative modes (n = 6), via focus groups and consultation exercises. Predominantly in formative phases e.g., scoping the topic or identifying needs (n = 8) and to a lesser extent in the final stage of policy and guideline development e.g., implementation or dissemination (n = 4). No policy or guideline engaged adolescents in all stages of the policy and guideline development process. Conclusion Overall, adolescent engagement in obesity and chronic disease prevention policy and guideline development is consultative and rarely extends throughout the entire development and implementation process.

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Section: Discussionmentioning

confidence: 99%

How are adolescents engaged in obesity and chronic disease prevention policy and guideline development? A scoping review

Mandoh

Redfern

Mihrshahi

et al. 2023

glob health res policy

View full text Add to dashboard Cite

show abstract

“…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 13,45 …”

Section: Discussionmentioning

confidence: 99%

“… 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 , 45 …”

Section: Discussionmentioning

confidence: 99%

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

Newman

Joseph

McDonald

et al. 2022

Health Expectations

Self Cite

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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.

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“…As a result, AYA cancer patients have seen poor outcomes across both physical and mental health . In recent years, a number of health organizations have been addressing this disparity in care …”

Section: Introductionmentioning

confidence: 99%

Thematic content of video narratives in patients and survivors of adolescent cancer

2020

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Objective: Modern day adolescents and young adults (AYAs) connect with their peers via a number of increasingly novel ways, many of which involve social media.These online relationships are often translated offline to increase one's social standing and quality of in-person relationships. However, when an AYA is diagnosed with a chronic medical condition, like cancer, in-person relationships with peers become difficult and the online component of socialization is all that is left. Video testimonials are a way that some AYAs have chosen to reach out to their peers; however, little is known about what AYAs are saying in these videos and how they are using them to connect with peers on a more intimate level.Methods: This study examined the content of video testimonials of n = 25 AYA cancer patients and survivors. Transcripts of videos were coded by a team of researchers to identify themes and overall tone.Results: Results suggested that films focused on struggles AYAs faced during their cancer journeys with a number of themes emerging; additionally, a hopeful tone was seen around the overall impact that cancer had on the patient's life.Conclusions: It may be the case that video testimonials are an effective way to allow AYA patients with a cancer history to explore their thoughts about their illness experience and fill an important social gap not available to them as they undergo treatment. K E Y W O R D S AYA, cancer, illness narrative, oncology, thematic analysis, video narrative 1 | BACKGROUND Adolescence and young adulthood is typically a time focused on forging an understanding of oneself and one's place in the world. These developmental tasks rely heavily on the importance of peer relationships and seminal coming of age experiences. A cancer diagnosis puts an end to what is typical and creates a disruption in this process. Research around adolescent and young adult (AYA) cancer patients suggests that keeping close peer relationships is vital to healthy coping and adjustment to one's cancer experience. 1 However, AYA patients are both physically and emotionally isolated from their peers. 2 New research is now exploring social networking and specifically video narratives as a way to connect with peers during cancer treatment. Little research has focused on the thematic content of these narratives. This paper aims to identify common themes discussed within cancer narratives, how these may relate to AYA tasks of development, and how this reflects the content of other similar narrative-based interventions with this population.

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

Cited by 7 publications

References 12 publications

How are adolescents engaged in obesity and chronic disease prevention policy and guideline development? A scoping review

How are adolescents engaged in obesity and chronic disease prevention policy and guideline development? A scoping review

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

Thematic content of video narratives in patients and survivors of adolescent cancer

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