Taking Care of an Adolescent and Young Adult Cancer Survivor: A Systematic Review of the Impact of Cancer on Family Caregivers

Abstract

Research usually investigates adolescents and young adults (AYA) with cancer in combination with younger and older cancer patients and survivors. However, AYAs with cancer are a unique group, and their caregivers’ experience may also differ from other caregivers of cancer survivors. This systematic review aims to understand the impact of a cancer diagnosis on family caregivers, comparing the experience of caregivers of AYA childhood cancer survivors (AYA CCS) and caregivers of AYA with cancer. Relevant studies were identified through PubMed, Scopus, and Web of Science databases, and their quality was assessed using the Joanna Briggs Institute’s critical appraisal checklists. Sixteen studies (17 reports) met the inclusion criteria. Findings were synthesized separately for caregivers of AYA CCS and caregivers of AYA with cancer. Results showed that caregivers in both groups experienced high distress after the diagnosis. Partners of AYAs with cancer experienced diminished quality of life (QoL) and over half reported moderate to high fear of cancer recurrence (FCR). Findings indicated that cancer negatively impacts family caregivers, regardless of the patient’s age at diagnosis. However, findings are heterogeneous, and most do not focus on QoL or FCR. More research is needed on the impact of cancer among these family caregivers.

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

“…The exclusion criteria included lack of access to children at any study stage (mortality and recurrence of the disease) and lack of information about the disease. Because parents are involved in caring for adolescent cancer survivors, most of the adolescents interact with doctor, nurse, and charity staff during treatment and posttreatment of cancer, and they play a valuable role in providing support to survivors [ 11 ]; Therefore, to collect richer information, they were included as sub-participants based on the study inclusion criteria, and their data combined with the data obtained from interviews with adolescents. Inclusion criteria for sub-participants were: Parents of childhood cancer survivors whose child is under 19 years old.…”

“…When people try to become independent and form a positive self-concept of themselves and their relationships, dreaming about an illness or its complications during this period can be particularly challenging. Autonomy, relationships with peers, future orientation, and uncertainty of recovery or non-recurrence of the disease complicate the situation [ 11 ].…”

Need for Behavioral Interventions for Young Adults Living with Advanced Cancer in the U.S.

“…Beyond benefits to patients, tailored behavioral interventions for YAs with advanced cancer could indirectly benefit caregivers, clinicians, and the broader population. By providing an additional source of support and training in patient communication and interpersonal relationship skills, we can enhance patient-caregiver relationships and reduce stress and strain for caregivers [37,38]. Improved patient-provider communication and patient satisfaction can also help healthcare providers better meet the holistic needs of their patients with the potential for enhanced quality of care and patient outcomes [36].…”

Life after paediatric brain tumour; the perspectives of the survivors and their parents

“…More attention should be paid to the PBT survivors' parents' perspectives, as survivors' challenges may affect their parents' QoL many years post-treatment (Nicklin et al, 2019). Additionally, the parents' distress may again have a negative impact on survivors' health (Neves et al, 2023). Including the voices of children, adolescents, young adults and adult PBT survivors and their parents can provide a comprehensive understanding of how long-term and late effects impact both survivors and parents in daily life.…”