Concerns and priority outcomes for children with advanced cancer and their families in the Middle East: A cross-national qualitative study

• DOI: 10.3389/fonc.2023.1120990
• Publication Date: 2023-03-14T05:36:24Z
• Authors: Sabah Boufkhed; Sema Yurduşen; Ghadeer Alarjeh; Fahad Ahmed; Waleed Alrjoub; Ping Guo; Sawsan Alajarmeh; Meltem Şengelen; Mustafa Cemaloğlu; Burça Aydın; Anwar Alnassan; Shireen Al-Awady; Tezer Kutluk; Omar Shamieh; Richard Harding
• Keywords: Family Caregivers; Social Isolation

Palliative care access is limited in the Middle-East, with few specialist centers and forcibly displaced migrants facing additional struggles to care. Little known about specificities of providing palliative children young people (CYP) cancer. They are rarely asked directly their concerns needs, which limits provision quality patient-centered Our study aims identify needs CYP advanced cancer families, Jordan Turkey.A qualitative cross-national Turkey framework analysis was conducted two pediatric Turkey. In each country, 25 CYP, 15 caregivers 12 healthcare professionals participated (N=104). Most (70%) (75%) were women.We identified five areas concern: (1) Physical pain other symptoms (e.g. mobility, fatigue); (2) Psychological anger, psychological changes); (3) Spirituality, uncertainty over future use "Tawakkul" religion as a coping mechanism); (4) Negative impact on social life isolation, loss support); (5) Burden caregiver families financial issues, siblings left behind). priority for both CYPs (particularly refugee families) but often overlooked during routine able share own priorities.Advanced must ensure assessment management across identified. Developing child- family-centered outcomes would monitoring Spirituality had more important role compared similar investigation regions.