798 - Exploring the Denial to Acceptance Continuum in Families of Pediatric Cancer Patients in Pakistan
Sunday, April 27, 2025
8:30am – 10:45am HST
Publication Number: 798.4954
Marissa Maheu, St. Jude Children's Research Hospital, Memphis, TN, United States; Marta Salek, St. Jude Children's Research Hospital, Memphis, TN, United States; Alia Ahmad, UCHS children's hospital Lahore, Lahore, Punjab, Pakistan; Atoofa Najmi, The Indus Hospital and Health Network, Bowmanville, ON, Canada; Afia tul Quanita, Aga Khan University hospital, Karachi, Sindh, Pakistan; Gia Ferrara, St. Jude Children's Research Hospital, Memphis, TN, United States; Courtney Staples, St. Jude Children's Research Hospital, Collierville, TN, United States; Carlos Rodriguez Galindo, St. Jude Children's Research Hospital, Memphis, TN, United States; Syed A. Hamid, Indus Hospital and Health Network, Karachi, Sindh, Pakistan; Sima Jeha, St. Jude Children's Research Hospital, Memphis, TN, United States; Jennifer W.. W. Mack, Jennifer Mack, Boston, MA, United States; Dylan Graetz, St. Jude Children's Research Hospital, Memphis, TN, United States
Student Researcher St. Jude Children's Research Hospital Memphis, Tennessee, United States
Background: For families, receiving a pediatric cancer diagnosis causes distress. Responses are frequently influenced by preconceived notions and cultural beliefs about cancer, impacting family responses and engagement with medical care. Clinicians help families transition from initial reactions to acceptance and action, as complex treatment plans are initiated. Inadequate support risks family denial, treatment delays, or discontinuation of treatment in low- and middle-income countries (LMICs). In Pakistan, the impact of cultural variables on the initial perceptions of families towards their child’s new cancer diagnosis is unknown. Objective: This study aimed to explore the denial-acceptance continuum of families with children newly diagnosed with cancer in Pakistan. Design/Methods: Semi-structured interviews were conducted with 20 clinicians and 18 caregivers at Children’s Hospital of Lahore and Indus Hospital in Karachi. Data were coded using a priori and novel themes. Two independent coders analyzed transcripts, with consensus meetings to review discrepancies with assistance from a third-party adjudicator when necessary. Thematic analysis identified phases of the denial-acceptance continuum and examined how clinician communication influenced family responses and treatment engagement. Results: While responses varied, most caregivers initially experienced shock and denial, often seeking alternative explanations or therapies with decisions influenced by their cultural views. Clinicians reported that many families struggled initially to understand the gravity of their child’s diagnosis, leading to reluctance in pursuing treatment. Families who received consistent, patient-centered communication and personalized counseling - including reassurance, emotional support, and frequent information exchange- gradually moved from denial towards an accepting and active care role. This helped address cultural beliefs and fears, build trust, and support them in navigating this emotional spectrum. Not all families progressed at the same pace, and some required more adjustment time, illustrating the need for individualized care strategies.
Conclusion(s): This study emphasizes the importance of bidirectional communication, to help families move from denial to acceptance of their child’s new cancer diagnosis. Helping families navigate this emotional spectrum is crucial to avoiding delays in care delivery and encouraging treatment adherence. Future studies should examine strategies to improve long-term treatment acceptance and adherence and the impact of communication on therapeutic relationships across LMICs.