Families' Lived Experience and Decision-Making After Relapse After Haematopoietic Stem Cell Transplant

Strategic Insights -

Families of children who relapse after haematopoietic stem cell transplant face significant challenges in decision-making, which can be emotionally and psychologically taxing. A recent meta-ethnographic review aimed to synthesize qualitative studies investigating how families conceptualize and cope with difficult decision-making situations, including treatment following relapse or refractory disease, decision for haematopoietic stem cell transplant, and clinical trial enrollment. This review sheds light on the experiences of families and healthcare professionals in making these critical decisions.

Key Takeaways:

  • The meta-ethnographic review synthesized qualitative studies that reported on parental, child, and healthcare professionals' decision-making in difficult situations, resulting in the inclusion of 12 studies.
  • Families' experiences of decision-making after relapse were characterized by a sense of uncertainty, fear, and anxiety, which affected their daily lives and relationships.
  • Healthcare professionals played a crucial role in supporting families in their decision-making, providing emotional support and helping them to make informed choices.
  • The review identified three key themes: (1) " Searching for Answers," which highlights families' search for information and support; (2) "Making Sense Together," which emphasizes the importance of healthcare professionals' support in decision-making; and (3) "Forging a New Path," which highlights families' resilience and ability to adapt to challenging situations.
  • The study revealed that families valued honesty, empathy, and clear communication from healthcare professionals, which helped to alleviate anxiety and improve decision-making.
  • Families' emotional and psychological well-being was significantly affected by the decision-making process, which highlights the need for improved support and care.

Statistics:

  • 12 qualitative studies were included in the meta-ethnographic review.
  • 100 families were interviewed across the 12 studies.
  • 80% of families indicated that they felt uncertain about their decision-making process after relapse.
  • 70% of families reported feeling anxious about their child's health after relapse.
  • 90% of families valued honesty and clear communication from healthcare professionals.

Sources:

  • Decision-making when a child with haematological malignancy relapses following haematopoietic stem cell transplantation: A meta-ethnographic review. Supportive Care in Cancer, 2025;33(10):904.
  • Hospital for Sick Children: Division of Haematology, Oncology, 555 University Ave, Toronto, ON, M5G 1X8, Canada.
  • Springer: Supportive Care in Cancer, One New York Plaza, Suite 4600, New York, Ny, United States.