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Description
“Dreaming with Survivors” is a project of and for child cancer patients and survivors. The project activities were designed by the target group through participatory methods and are intended to improve the long-term follow-up of childhood cancer survivors, to bridge inequality of access to life and health insurance, to promote the right to caring for caregivers and raising awareness of child cancer in society at large. This project aims to give a voice to child cancer survivors who, due to their condition, face unequal opportunities, which could jeopardize their quality of life. It also promotes the implementation of a document that includes all information about the history of the disease and treatments already performed. Activities are defined as questionnaires to the survivors themselves, an awareness campaign and the creation of a game for dissemination in schools.
Summary of project results
The project aimed to address several critical issues faced by children and young people with cancer, as well as survivors. In Portugal, there are an estimated 400 new cases of childhood cancer each year, with 2,000 children having undergone treatment in the past five years. While the five-year survival rate for childhood cancer is around 80%, two-thirds of survivors experience long-term effects, which are severe in 50% of cases and significantly impact their lives. Most survivors lack precise information about their treatments, the long-term risks, and preventive measures.
The state and society are not fully prepared to meet the numerous needs of patients during active treatment and survivorship. The educational, legal, and social systems often allow inequalities that hinder young survivors'' reintegration into daily life, compromising their quality of life. Children and young people with cancer, as well as survivors, feel that their voices and needs are not heard. For instance, there is no comprehensive document in Portugal detailing their treatments and potential long-term effects. Survivors often face job rejections due to their medical history and sequelae, and the responses from the educational and social protection systems are neither swift nor adequate. Additionally, survivors struggle to obtain bank loans or insurance.
These issues lead to several negative societal consequences, including higher youth unemployment rates, increased social exclusion, reduced quality of life due to inadequate follow-up care, increased caregiver suffering, and unequal opportunities. There is no known national response addressing the needs of young cancer survivors, empowering them to fight for their rights and make their voices heard. The project sought to fill this gap by providing support and advocacy for these young individuals, aiming to improve their quality of life and ensure their needs are met.
During the DwS project, various activities were conducted to empower pediatric cancer survivors, including informational and well-being sessions for caregivers, awareness campaigns in schools, capacity-building activities, webinars on pediatric oncology topics, and the design and production of a game for adolescents and young adults in pediatric oncology. The project also involved the creation of a brochure detailing the rights of families, patients, and survivors, national meetings to discuss the work done by SCP groups, work meetings with SCP groups, and the September Gold campaign.
The project began in May 2019 and proceeded normally until March 2020, when the COVID-19 pandemic necessitated a significant restructuring. Activities transitioned to an online format, which had both advantages and challenges. On the positive side, the online format allowed the project to reach many beneficiaries who otherwise could not participate. However, there were difficulties with caregivers adapting to new technologies and some survivors becoming disengaged towards the end of the project.
The goal of holding work meetings with various SCP groups was achieved, as well as conducting a webinar on Pediatric and Young Adult Oncology, and organizing three training sessions on life trajectories and three national meetings to discuss SCP work. Additionally, a brochure on the rights of patients and families was created, and well-being activities for caregivers were conducted. The September Gold awareness campaign and the development of a game on Pediatric Oncology for adolescents and young adults were also successfully completed.
In terms of capacity-building, all defined objectives were met. The project had planned 24 empowerment activities for SCP and completed 22, with the shortfall due to online fatigue towards the project''s end. Similarly, 18 informational sessions for caregivers were planned, but 13 were completed due to both online fatigue and low engagement from this target group. However, this was offset by the well-being activities, which saw high participation in the initial in-person format. School activities were also impacted by the COVID-19 context and educational priorities.
During the DwS project, various activities were conducted to empower pediatric cancer survivors, including informational and well-being sessions for caregivers, awareness campaigns in schools, capacity-building activities, webinars on pediatric oncology topics, and the design and production of a game for adolescents and young adults in pediatric oncology. The project also involved the creation of a brochure detailing the rights of families, patients, and survivors, national meetings to discuss the work done by SCP groups, work meetings with SCP groups, and the September Gold campaign.
The project began in May 2019 and proceeded normally until March 2020, when the COVID-19 pandemic necessitated a significant restructuring. Activities transitioned to an online format, which had both advantages and challenges. On the positive side, the online format allowed the project to reach many beneficiaries who otherwise could not participate. However, there were difficulties with caregivers adapting to new technologies and some survivors becoming disengaged towards the end of the project.
The goal of holding work meetings with various SCP groups was achieved, as well as conducting a webinar on Pediatric and Young Adult Oncology, and organizing three training sessions on life trajectories and three national meetings to discuss SCP work. Additionally, a brochure on the rights of patients and families was created, and well-being activities for caregivers were conducted. The September Gold awareness campaign and the development of a game on Pediatric Oncology for adolescents and young adults were also successfully completed.
In terms of capacity-building, all defined objectives were met. The project had planned 24 empowerment activities for SCP and completed 22, with the shortfall due to online fatigue towards the project''s end. Similarly, 18 informational sessions for caregivers were planned, but 13 were completed due to both online fatigue and low engagement from this target group. However, this was offset by the well-being activities, which saw high participation in the initial in-person format. School activities were also impacted by the COVID-19 context and educational priorities.