The lived experience of people affected by cancer: A global cross-sectional survey protocol.

Journal: PloS one

Volume: 19

Issue: 2

Year of Publication: 2024

Affiliated Institutions:  The Royal Children's Hospital and Murdoch Children's Research Institute, Melbourne, Australia. School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics, UNSW Sydney, NSW Sydney, Australia. World Health Organization, Department of Non-Communicable Diseases, Geneva, Switzerland. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia. American Childhood Cancer Organization, Beltsville, Maryland, United States of America. Uganda Child Cancer Foundation, Kampala, Uganda. National Cancer Institute, Center for Cancer Research, National Institute of Health, Bethesda, Maryland, United States of America.

Abstract summary 

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

Authors & Co-authors:  Cayrol Julie J Wakefield Claire E CE Ilbawi André A Donoghoe Mark M Hoffman Ruth R Echodu Moses M Schilstra Clarissa C Ortiz Roberta R Wiener Lori L

Study Outcome 

Source Link: Visit source

Statistics
Citations :  Ferlay J, Ervik M, Lam F, Colombet M, Mery L, Piñeros M, et al. Global Cancer Observatory: Cancer Today. Lyon, France: International Agency for Research on Cancer. [Internet]. 2020 [cited 2023 Apr 12]. https://gco.iarc.fr/today
Authors :  9
Identifiers
Doi : e0294492
SSN : 1932-6203
Study Population
Male,Female
Mesh Terms
Adult
Other Terms
Study Design
Cross Sectional Study
Study Approach
Quantitative
Country of Study
Publication Country
United States