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

Maria Carolina Neves; Ana Bártolo; Judith B Prins; Célia M D Sales; Sara Monteiro

doi:10.3390/ijerph20085488

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

Int J Environ Res Public Health. 2023 Apr 12;20(8):5488. doi: 10.3390/ijerph20085488.

Authors

Maria Carolina Neves¹, Ana Bártolo^{2

3

4}, Judith B Prins⁵, Célia M D Sales¹, Sara Monteiro^{4

6

7}

Affiliations

¹ Center for Psychology at the University of Porto, Faculty of Psychology and Education Sciences, University of Porto, 4200-135 Porto, Portugal.
² I2P-Portucalense Institute of Psychology, 4200-072 Porto, Portugal.
³ RECI-Research in Education and Community Intervention, Piaget Institute-ISEIT/Viseu, 3515-776 Viseu, Portugal.
⁴ CINTESIS@RISE, Department of Education and Psychology, University of Aveiro, 3810-193 Aveiro, Portugal.
⁵ Department of Medical Psychology, Radboud University Medical Centre, 6500 HB Nijmegen, The Netherlands.
⁶ Departament of Social Sciences and Management, Open University, 1269-001 Lisboa, Portugal.
⁷ Center for Global Studies, Open University, 1269-001 Lisboa, Portugal.

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.

Keywords: AYA; adolescent; cancer; caregiver; psychology; survivor; young adult.

Publication types

Systematic Review
Review
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Cancer Survivors*
Caregivers
Child
Humans
Neoplasms* / therapy
Quality of Life
Survivors
Young Adult

Grants and funding

This article was supported by national funding from the Portuguese Foundation for Science and Technology, within a Ph.D. scholarship to the first author (2021.05418.BD), and through funding to CPUP (UIDB/00050/2020).