Online information and support needs of young people with cancer: a participatory action research study

Abstract

PurposeThe Internet is a fully integrated part of young people’s life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs are met by existing online resources.Patients and methodsThis was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13–24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved.ResultsYoung people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources.ConclusionThe way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people.

Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology

“…A common theme among the selected records (n = 20) was that AYA are a unique group with unique information needs. 18,22,[34][35][36][37][38][39]42,43,[47][48][49][50][51][52][53][54][55][56][57] This ''uniqueness'' was attributed to numerous factors, such as the intrinsic developmental specificities of AYA patients and the rarity of what AYA are experiencing compared to their peers.…”

“…35,38,43,49,51 They reported that most AYA with cancer look for factual online information on diagnosis, treatments, symptoms, and side effects. However, the desire to access cancer information varies depending on the phase of the cancer timeline 38,49 : When on treatment, AYA prefer to receive information on cancer management from their treatment team and tend to use internet and social media predominantly for entertainmentrelated purposes and to stay in contact with family and friends. AYA who have completed their treatment, however, more often actively seek practical information on issues such as body image, fertility, fear of recurrence, nutrition, health insurance, and financial support.…”

“…AYA who have completed their treatment, however, more often actively seek practical information on issues such as body image, fertility, fear of recurrence, nutrition, health insurance, and financial support. 35,49,51 Social media as a driver of behavioral changes. Six articles focused on the importance of social media networks or apps for behavioral changes in patients, 55,[58][59][60][61][62] such as a smartphone medication reminder to promote oral treatment adherence, 60 an online cookbook with healthy recipes to improve nutritional intake and reduce obesity, 62 a physical activity (PA) intervention program using Facebook and Fitbit to encourage PA, 61,63 an online-and computermediated support group to combat cancer-related fatigue, 64 an appealing cancer information App, 58 and a health-related quality-of-life tool for retinoblastoma survivors, which allows the medical team to initiate a discussion on psychosocial difficulties.…”

Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature

“…The transition at the end of active treatment into life after cancer often generates feelings of anxiety, fear and uncertainty for patients and families (Nathan et al, 2011). It has been reported that AYA can feel unprepared for life after treatment and experience new concerns around maintaining health and wellness when cancer treatment ends (Fern et al, 2013;Lea et al, 2018;Nathan et al, 2011;Thompson, Palmer, & Dyson, 2009). It has been proposed that AYA should have "access to resources and/or referral information that can help them reintegrate back into normal society" (Thompson et al, 2009, p. 210).…”

Avoir sa santé en main : le sentiment d’habilitation tel que perçu par les jeunes adultes souffrant d’un cancer avancé

“…Récemment, on a viserà mieux comprendre l'expérience des jeunes adultes souffrant d'un cancer avancé et la manière d'optimiser leurs efforts d'adaptation psychosociale en faisant appel aux ressources personnelles et aux services en santé (DePauw et al, 2019;Cheung et Zebrack, 2017;Lea et al, 2018;Leuteritz et al, 2017;Quinn et al, 2015;Warner et al, 2018;Zebrack et al, 2013). Le sentiment d'habilitation est bien sûr inhérent à ces processus.…”