Walking a tightrope – as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties

Abstract

Purpose Eating difficulties cause reduced food intake and poor quality of life among adolescents and young adults (AYAs) with cancer. Therefore, next-of-kin eating support is crucial. The purpose of this study was to explore the lived experiences of being close to AYAs with cancer in the context of eating when they are at home between high-emetogenic chemotherapy (HEC) sessions. Method In-depth interviews were conducted with 12 next-of-kin to AYAs (15–29 years old) with oncological or haematological diseases, treated with HEC. Van Manen’s hermeneutic-phenomenological approach guided the design. Results The essential meaning of the next-of-kin experiences is reflected in the overarching theme “Utilizing meals as an action-opportunity” consisting of two subthemes: ’Being on constant alert’ and “Walking a tightrope to maintain usual everyday life.” Conclusions Findings revealed that utilizing meals as an action-opportunity towards AYAs’ food intake involved existential feelings including fear of losing their loved ones. Next-of-kin experienced that providing support through and with food was their only avenue of action. However, this sparked feelings of frustration and powerlessness.

Keywords

• adolescents/young adults
• cancer
• eating difficulties
• family/next-of-kin support
• high-emetogenic chemotherapy
• lack of appetite
• meals
• nausea