‘This is not part of my life plan’: A qualitative study on the psychosocial experiences and practical challenges in young adults with cancer age 25 to 39 years at diagnosis

Abstract

Objective Adolescents and young adults with cancer face unique psychosocial and practical issues. However, patients across this group encounter different life experiences, cancer diagnoses and treatment settings given the tailored services for patients ages 15 to 24. Here, we qualitatively explore the psychosocial experiences and practical challenges of young adults (YAs) with cancer diagnosed between ages 25 and 39 in the United Kingdom. Methods We invited YAs diagnosed with cancer in the 5 years prior to enrolment at participating sites to take part in semi‐structured interviews or focus groups. Transcripts were analysed using inductive thematic analysis. Two YA patients reviewed the results to ensure robustness. Results Sixty‐five YAs with varied diagnoses participated. Participants struggled to balance work, childcare and financial solvency with treatment. The halt in family and work life as well as changes in image and ability threatened participants’ identity and perceived ‘normality’ as a YA, however, these also stimulated positive changes. YAs experienced social isolation from friends and family, including children. Many struggled to cope with uncertainty around treatment outcomes and disease recurrence. Conclusion The disruption of family and work life can lead to age‐specific issues in YAs diagnosed with cancer. Age‐tailored psychological and practical services must be considered.

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

“…A patient's social role (fulfilling a recognized position in society, e.g., parent, employee, student) may alter due to cancer (treatment): participation in social activities may be limited and social maturation may be disrupted [32]. Due to the long-term effects of treatment, AYAs may find it difficult to make or maintain social contacts and an active and independent life [32,41,94]. Social functioning has been shown to be more challenging for AYAs compared to an age-matched population [32].…”

‘Let Me Know If There’s Anything I Can Do for You’, the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis

“…71.0% of the patients would like to use the application with their close friends, but they also reported considering inviting their parents (41.1%) and their partner (35.5%). 1 Among the 121 participants, as described in Table 1, fourteen did not complete the concluding part of the questionnaire about their expectations of the AYA Match app; 2 Among the 37 participants, as described in Table 1, two did not complete the concluding part of the questionnaire about their expectations of the AYA Match app; 3 Participants were allowed to select multiple options, percentages do not add up to 100; 4 n/a = not applicable; 5 Additional reasons mentioned by respondents included: 'I'll accept all the help I can get', 'I'd like to get in touch with other patients', 'I've been asked to test the application by my patient organization', 'It'd be great to talk to someone who understands my situation', 'My doctor referred me', 'I have trouble asking for help and I hope this app will help', 'I'd like to communicate my needs to a group of people at once', 'I'd like to stay updated about my loved one with cancer', 'I mainly hope this app helps my AYA'.…”

“…Adolescence and young adulthood are challenging life phases of physical, emotional, cognitive and social maturation. Dealing with a life-threatening disease whilst trying to achieve developmental milestones can have a negative impact on the health-related quality of life of AYA cancer patients [ 3 , 4 , 5 ].…”

“…Adolescents and young adults are dealing with important and future-shaping matters such as completing education, becoming financially and socially independent, developing their own identity [ 4 , 5 ], exploring sexuality, building long-term relationships and deciding on whether they want to become a parent [ 3 , 5 , 6 ]. The sudden disruption of their (social) life, possible changes in physical appearance, confrontation with mortality, increased temporary dependence on informal caregivers like partner or parents, the risk of losing reproductive capacity and other health-related concerns caused by their cancer diagnosis or treatment disturb or even disrupt the ‘normal’ development of these young people [ 5 , 6 , 7 , 8 ]. AYAs diagnosed with cancer report lower social functioning levels compared to their healthy peers even two years after diagnosis [ 8 ].…”

Describing Unmet Supportive Care Needs among Young Adults with Cancer (25–39 Years) and the Relationship with Health-Related Quality of Life, Psychological Distress, and Illness Cognitions

“…A growing body of research has highlighted specific psychosocial issues experienced by young adults (YAs) ages 25 to 39 with cancer, such as difficulty balancing work or childcare with treatment, financial distress, and social isolation from friends and family [1,2]. However, evidence on whether YAs need access to support services for the issues experienced is lacking.…”