Young Adults’ Lived Experiences with Cancer-Related Cognitive Impairment: An Exploratory Qualitative Study

Abstract

Cancer-related cognitive impairment (CRCI; e.g., disrupted memory, executive functioning, and information processing) affects many young adults, causing significant distress, reducing quality of life (QoL), and thwarting their ability to engage in professional, recreational, and social experiences. The purpose of this exploratory qualitative study was to investigate young adults’ lived experiences with CRCI, and any strategies (including physical activity) they use to self-manage this burdensome side effect. Sixteen young adults (Mage = 30.8 ± 6.0 years; 87.5% female; Myears since diagnosis = 3.2 ± 3) who reported clinically meaningful CRCI whilst completing an online survey were interviewed virtually. Four themes comprising 13 sub-themes were identified through an inductive thematic analysis: (1) descriptions and interpretations of the CRCI phenomenon, (2) effects of CRCI on day-to-day and QoL, (3) cognitive–behavioural self-management strategies, and (4) recommendations for improving care. Findings suggest CRCI is detrimental to young adults’ QoL and must be addressed more systematically in practice. Results also illuminate the promise of PA in coping with CRCI, but research is needed to confirm this association, test how and why this may occur, and determine optimal PA prescriptions for young adults to self-manage their CRCI.

“I couldn't connect the wires in my brain.” Young adult cancer survivors' experience with cognitive functioning

“…Indeed, CRCI can have a substantial and lasting effect on the lives of YA cancer survivors who are undergoing critical transition points in forming social bonds and working toward educational and career goals. 22,23 Cognitive, educational, and vocational rehabilitation interventions could be strengthened by tailoring intervention content to address the unique needs of YA cancer survivors and the specific impacts of CRCI. For example, interpersonal effectiveness skills training could be incorporated to prevent or address misunderstandings from others regarding YA cancer survivors' intentions when they are unable to recall names or need additional time to process new information.…”

“…In addition to these more problem-focused coping strategies, 28 provided survivors the ability to adapt to their CRCI. 23 In contrast, forcing oneself to "power through" (ID 20) and perform at the same level as their pre-cancer abilities was described as creating an unhelpful spiral of stress that worsened their cognitive functioning.…”

“…The YA cancer survivors in our study also shared their experiences about the effects of CRCI on social relationships, educational, and work. Indeed, CRCI can have a substantial and lasting effect on the lives of YA cancer survivors who are undergoing critical transition points in forming social bonds and working toward educational and career goals 22,23 . Cognitive, educational, and vocational rehabilitation interventions could be strengthened by tailoring intervention content to address the unique needs of YA cancer survivors and the specific impacts of CRCI.…”

“…A few strategies were described as helpful for some participants and unhelpful for others: apps/games, medications/supplements, and yoga. Similarly, another qualitative study of CRCI in YA cancer survivors found that practical organizational strategies along with cognitive training or relaxation provided survivors the ability to adapt to their CRCI 23 . In contrast, forcing oneself to “power through” (ID 20) and perform at the same level as their pre‐cancer abilities was described as creating an unhelpful spiral of stress that worsened their cognitive functioning.…”

Survivorship among patients with haematological cancer: Work disability, dementia, and neuropathy

“…Symptoms can cause changes in work activities, exercise, household duties, hobbies, and affect relations to both family and friends. Typical work-related activities that are affected by CRCI and CIPN include planning, scheduling, driving, typing, standing, and manual work (202)(203)(204). A newly published study found that 30.4% of patients with central or peripheral neuropathy due to chemotherapy were forced to change work activities in relation to their symptoms, and 35.5% had reduced their work time from full-time to part-time.…”