Parental experiences of childhood leukemia treatment in indonesia

Area of Science:

• Pediatric Oncology
• Health Economics
• Psychosocial Support

Background:

• Acute lymphoblastic leukemia (ALL) treatment presents significant challenges for families.
• Understanding the multifaceted experiences of parents is vital for improving care.
• Previous research has not fully captured the socioeconomic and psychological burden on Indonesian families undergoing childhood leukemia treatment.

Purpose of the Study:

• To investigate the socioeconomic, treatment-related, and psychological experiences of parents whose children are undergoing acute lymphoblastic leukemia treatment.
• To identify key areas for improvement in healthcare communication and support systems for these families.

Main Methods:

• A qualitative study involving semi-structured interviews with 51 parents of children with ALL.
• Interviews were conducted by psychologists at an academic hospital in Indonesia between November 2004 and April 2006.
• The WK-ALL-2000 protocol and donated chemotherapy were utilized for treatment.

Main Results:

• Significant decrease in family income (69%) and parental job loss (29% fathers, 8% mothers) attributed to child's leukemia.
• Widespread financial difficulties (78%), debt accumulation (65%), and treatment compromises (18%) due to treatment costs.
• Parents expressed a strong need for more information (86%) and better communication (77%) with doctors.
• Parent organizations provided minimal support, including lack of visits (69%), information (59%), and emotional support (55%).

Conclusions:

• Childhood leukemia treatment imposes a profound socioeconomic burden on Indonesian families.
• Enhancing communication and information dissemination between parents and healthcare providers is essential.
• The role and effectiveness of parent support organizations require significant improvement to provide adequate assistance.