"There Are Two Healing Processes in Cancer Care-There Is a Physical Healing and a Mental Adaptation Process": A Pilot Study for Preparing Children and Adolescents with Osteosarcoma for Limb Amputation.

BACKGROUND/OBJECTIVES: This study assessed how to best prepare pediatric and adolescent cancer patients for amputation and support them afterward.

METHODS

This pilot qualitative study explored pre- and post-amputation experiences from the perspectives of nine pediatric and adolescent survivors who underwent amputation. Hour-long audio-recorded semi-structured interviews were transcribed and analyzed using the Sort and Sift, Think and Shift qualitative approach.

RESULTS

Participants described the informational supports they received before surgery, including guidance on what to expect, contact with amputation-related organizations, and exposure to tangible tools, such as a physical model of a knee joint. Emotional support from fellow amputees and healthcare providers, particularly surgeons, was also found to be meaningful. Individuals also identified unmet needs and gaps in emotional care. These included clearer guidance on post-surgical adaptations (e.g., basic self-care and navigating physical limitations) and the need for information tailored to their learning styles. Many emphasized the importance of improved pain management resources, expanded access to mental health services for both them and their families, and support in adjusting to changes in body image and social relationships. Participants also shared advice for future patients, recommending strategies such as personalizing hospital rooms, connecting with other amputees through social media, and using art to process their experience and say goodbye to the lost limb.

CONCLUSIONS

Interviews with nine cancer survivors provide guidance for improving holistic, patient-centered care throughout the amputation process. Informational and emotional support should be tailored to an individual's learning style and specific needs, in addition to their age at the time of surgery.