Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer

Hanghøj, Signe; Pappot, Helle; Hjalgrim, Lisa Lyngsie; Hjerming, Maiken; Visler, Camilla; Boisen, Kirsten A

doi:10.1089/jayao.2019.0014

Cited by 10 publications

(7 citation statements)

References 15 publications

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“…Moreover, in terms of the composition of the network, children with more diverse social networks reported fewer depressive symptoms, higher self-rated health, fewer behavioral problems and more prosocial behavior [38]. Hanghoj, et al [39], and Poon [40] both reported the theme of belonging, experienced by young people who were engaged in prosocial endeavors. Additionally, peer acceptance [41], social satisfaction [33,42] and supportive relationships were also reported as positive outcomes of engaging in prosocial behavior [43,44].…”

Section: Major Themes 331 Relationship Between Helping Others and Men...mentioning

confidence: 98%

“…Some studies have concluded that perceptions of the social status of young people also play a role in demonstrating prosocial behavior. Factors such as popularity [186], young people with high social status [187], social integration and absorption [22], a lower degree of influence in class [39], sociocultural resources [173] and receiving high social support [180,188] were all related to social status and prosocial behavior. When considering social network facilitators, prosocial networks [189], greater perceptions of sociopolitical control [106,151] and micro-, mezzo-, and exo-system factors [106] were identified.…”

Section: Factors Associated With Youth Engagement In Prosocial Behavi...mentioning

confidence: 99%

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Understanding the Role of Prosocial Behavior in Youth Mental Health: Findings from a Scoping Review

2022

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Background: Mental health during a person’s adolescence plays a key role in setting the stage for their mental health over the rest of their life. Hence, initiatives that promote adolescents’ wellbeing are an important public health goal. Helping others can take a variety of forms, and the literature suggests that helping others can positively impact a person’s wellbeing. However, there is a lack of data that synthesizes the impact of helping others on adolescents’ wellbeing. Therefore, this review aims to synthesize the available evidence related to helping others and to youth wellbeing. Methods: A scoping review search was undertaken with no date restrictions. CINAHL, Medline and PyschINFO, were searched for studies that analyzed the relationship between helping others and youth mental health. Results: Data from 213 papers were included in the scoping review. Three main themes were observed: (1) the relationship between helping others and mental health outcomes among youths (positive and negative); (2) factors associated with youth engagement in prosocial behavior (facilitators and barriers); (3) the impact of interventions related to helping others, and to youth mental health (positive and negative). Conclusions: An overwhelmingly positive relationship exists between youth prosocial behavior and its influence on youth mental health.

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Section: Major Themes 331 Relationship Between Helping Others and Men...mentioning

confidence: 98%

Section: Factors Associated With Youth Engagement In Prosocial Behavi...mentioning

confidence: 99%

Understanding the Role of Prosocial Behavior in Youth Mental Health: Findings from a Scoping Review

2022

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“…Therefore, different aspects of the involvement process were evaluated via qualitative research projects, which were performed as either adding on to specific projects [ 24 ] or describing experiences of involvement processes during participation in cancer service user initiatives [ 21 ] as well as the impact of service patient involvement from the perspective of adolescents and young adults in a cancer trajectory [ 25 ]. Additionally, the reason for helping others by taking part in service user design was investigated [ 26 ]. This somewhat extensive approach was taken to learn more about patient-involving processes in the vulnerable group of AYAs in a cancer trajectory.…”

Section: Discussionmentioning

confidence: 99%

Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital

et al. 2023

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Background The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016–2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported. Main body A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016–2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10–15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. Conclusion Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.

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“…Safe communication covered safety by writing personal experiences and discussing tough topics, which is in line with other studies in which it has been reported that online forums are considered a safe place to discuss sensitive topics. 42,43 Altruism is a common theme in studies of AYA cancer patients, generally, 13 and in studies on virtual communication more specifically; many cancer patients value responding to other people's questions with the sole aim of being of help. 44 The possibility of uploading personal YouTube clips was not well received by the AYAs in our study, as they perceived their illness to be a private matter.…”

Section: Discussionmentioning

confidence: 99%

“…11,12 Virtual communities meet a wish among AYAs with cancer to socialize and form communities with like-minded people, and for shared understanding and support. 3,13 Generally, AYAs with cancer have reported a lack of peer social support and have expressed a need for interventions to provide social support. 14,15 This makes sense, given that online support groups among cancer patients have been shown to increase the feeling of empowerment, and reduce depression, cancer‐related trauma, and perceived stress.…”

Section: Introductionmentioning

confidence: 99%

Adolescents’ and young adults’ experiences of a prototype cancer smartphone app

et al. 2021

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Objective Smartphone cancer-related apps have been shown to meet some of the needs of adolescents and young adults (AYAs) during their cancer trajectory. However, there is a lack of apps evaluated by AYAs; thus, the quality of many of these apps has been contested. The aim of this study was to investigate the usefulness of a cancer smartphone app called Kræftværket. The AYA participants reflected on their first experiences of the app and whether it was a relevant and useful tool during and after their cancer trajectory. Methods A total of 20 AYA cancer patients aged 16-29 years (n = 10 on treatment, n = 10 in follow up) were provided with a prototype of the Kræftværket app during a 6-week test period (April-May 2018). After the test period, n = 17 participated in focus group interviews, which were analyzed thematically. Results The following themes were found: Sharing personal information (anonymity, safe communication, tough topics, videos and YouTube clips, tracking statistics); Normalcy (Seeing oneself reflected in in others, not alone, general and specific communities); Need for interaction (response from the app, information provided by the app, the app should give more back); and An everyday tool (integrating the app into daily routines, competition between app and Facebook group, temporary needs). Conclusions The app was perceived to be most relevant at disease onset. During the treatment period, both diagnosis-specific information and communities were requested. There was a call for a clearer distinction between the purpose of the app and other Facebook communities and for a notification function.

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Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer

Cited by 10 publications

References 15 publications

Understanding the Role of Prosocial Behavior in Youth Mental Health: Findings from a Scoping Review

Understanding the Role of Prosocial Behavior in Youth Mental Health: Findings from a Scoping Review

Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital

Adolescents’ and young adults’ experiences of a prototype cancer smartphone app

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