The Continuity of Cancer: Children and Adolescent’s Experiences of Ending Cancer Treatment – A Systematic Review

Abstract

As the research and treatment of childhood cancer steadily progresses, so has the interest in children’s needs, not only throughout such treatment but also following completion. Whilst there is increased literature focussing on the long-term psychosocial impact of treatment completion, little is currently known about how children and young people (CYP) experience the more immediate end of their cancer treatment. The current review seeks to examine CYP’s experiences of the end of their cancer treatment . Sixteen studies were retrieved using a systematic search strategy across five databases, all of which used qualitative methodology. Thematic synthesis was chosen to analyse the data. Four overarching themes were generated, which encompassed ‘ the continuity of cancer’, ‘ ambivalence of needs’, ‘ making sense of the cancer experience’ and ‘ sense of self following the ending’. The end of treatment is a time of complexity for CYP, yet it is currently largely overlooked. In order to scaffold these endings for CYP, increased emphasis and thought needs to be placed on the end of treatment and the support that is provided within it.

Adolescent Cancer Survivors and Their Parents’ Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study

“…However, they voiced varying levels of interest in being involved and described information needs changing over time. Likewise, a systematic review described adolescents' ambivalence between wanting explanations and continued support while simultaneously moving past cancer (von Werthern et al, 2022). Furthermore, our findings align with a systematic review of communication with adolescent survivors that concluded that HCPs must understand adolescents' individual perspectives and preferences to engage them in their healthcare posttreatment (Smith et al, 2020).…”

“…The findings that survivors often worry that somatic symptoms (e.g., pain and tiredness) indicate cancer recurrence has also been reported elsewhere (Cunningham et al, 2021;von Werthern et al, 2022). Adolescence is a particularly vulnerable time for experiencing a high fear of recurrence (Tutelman & Heathcote, 2020), and worry about bad news is seen as a reason why young survivors avoid follow-up consultations (Smits-Seemann et al, 2016).…”

“…Thus, the end of treatment does not mean the end of illness-related concerns for adolescent survivors and their families. Although the transition to survivorship is a vulnerable phase, significant knowledge gaps remain regarding how this period is perceived by adolescent CCSs and their families (von Werthern et al, 2022;Walker & Lewis, 2016). Likewise, healthcare personnel (HCP) have few guidelines or recommendations for the type and level of psychosocial support this growing population needs in early survivorship (Lown et al, 2015).…”

“…Post treatment follow-up care for childhood cancer survivors (CCSs) is recommended, including regular surveillance and screening for relapse and late effects and patient education (Kinahan et al, 2015). Nevertheless, at the end of treatment, there are new concerns for family members, who can experience significant alterations in roles, expectations, and relationships that they are unprepared for, resulting in uncertainty and stress (Greenzang et al, 2016; Long et al, 2018; Walker & Lewis, 2016). Furthermore, families describe an abrupt reduction in psychosocial and practical support from their oncology healthcare team posttreatment, resulting in feeling lost, unsafe, and abandoned (Keller et al, 2020; Walker et al, 2018).…”

“…In addition, the toxicity of cancer treatment can cause chronic health problems (i.e., long-term and late effects, which may include secondary cancer, cardiovascular and pulmonary problems, fatigue, hormonal dysfunctions, neurocognitive challenges, and more; Bhakta et al, 2017; Brinkman et al, 2016; Oeffinger et al, 2006). Parents report increased worry about recurrence and late effects while feeling greater responsibility for their adolescents’ health as the oncology team is no longer the primary care provider (Walker & Lewis, 2016).…”