Abstract
BackgroundIn Denmark, around 500 adolescents and young adults (AYAs) aged 15–29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, however, not currently being adequately met. This study explores the distinctive needs of AYAs aged 15–25 and affected by cancer with the aim of developing and designing an intervention that accommodates these needs and allows AYAs to pursue everyday life following active cancer treatment.MethodsWe combined multiple qualitative methods to conduct six sub-studies: 1) participant observation among support groups for AYAs affected by cancer, 2) field visit at a large Danish hospital, 3) qualitative interviews with AYAs currently or previously diagnosed with cancer, 4) qualitative interviews with practitioners working with young cancer patients or AYAs with chronic conditions, 5) an interactive workshop with practitioners, and 6) an interactive workshop with AYAs. The empirical material was collected between May 2016 and April 2019. The empirical material was read, analysed thematically and coded into the themes; 1) diagnosis and treatment, 2) form of education and 3) age, financial challenges and legal entitlements.ResultsAcross the empirical material, we found that AYAs’ cancer experience was heterogeneous. The needs of AYAs differed according to 1) diagnosis and treatment, 2) type of education and 3) age, financial situation and legal entitlements. The findings demonstrate a need for a tailored intervention accommodating the variety of opportunities, requirements and challenges of AYAs with cancer. We propose an intervention consisting of a multidisciplinary team sited at the hospital where the individual AYA receives treatment. The team’s main task will be to maintain AYAs’ social competences and ease their return to everyday life after serious illness by balancing educational requirements with cancer treatment.ConclusionBased on the perspectives of practitioners and AYAs affected by cancer, this study outlines an intervention designed as a care pathway in which a multidisciplinary team provides individual and tailored support to AYAs with cancer from the time of diagnosis during and beyond active cancer treatment.
Highlights
In Denmark, around 500 adolescents and young adults (AYAs) aged 15–29 are diagnosed with cancer each year
In our initial intervention design, which we presented at the practitioner workshop, the intervention was directed by a nurse with specialist knowledge of young people and their lives, who would undertake three key elements of the intervention, covering needs for support identified in our empirical material: 1) having conversations with AYAs; 2) ensuring continuous, stable contact with AYAs’ educational institutions; and 3) providing concrete, practical help to AYAs
In the following, we describe the distinctive needs of AYAs affected by cancer in terms of their social reintegration and return to everyday life during and following treatment
Summary
In Denmark, around 500 adolescents and young adults (AYAs) aged 15–29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, not currently being adequately met. People who survive a cancer diagnosis need help to alleviate physical and psychosocial late complications and adjust to everyday life [1, 2]. This has led to an increased focus on cancer rehabilitation and on Broholm‐Jørgensen et al BMC Public Health (2022) 22:241 providing support for cancer patients reintegrating into everyday life. AYAs face additional challenges because of the intersection of the cancer experience with the developmental tasks associated with this phase of life, such as establishing their identity, developing a positive body image and sexual identity, separating from their parents, increasing their involvement with peers, dating, and beginning to make important life choices and decisions about education [14,15,16,17,18]
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