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Keywords

anorectal malformations, chronic disease, patient-centered care, professional-family relations, social support

 

Authors

  1. Tvedte, Matthew J. MSW, LICSW
  2. Henaghan, Amelia S. MSN, CPNP
  3. Nandivada, Prathima MD
  4. Dickie, Belinda Hsi MD, PhD

Abstract

Introduction: The medical and surgical care of individuals diagnosed with an anorectal malformation (ARM) has become increasingly standardized with greater attention to the importance of holistic and long-term treatment approaches. Development of opportunities for social connection and peer support among individuals diagnosed with an ARM and their families is a valuable contribution to care for this population. The desire to increase these types of opportunities in our center led to the development of a family education and peer support day for individuals with ARM and their families.

 

Methods: We identify and describe five priorities for event development: (a) securing hospital and center-based leadership support, (b) maximizing family input, (c) limiting financial burden, (d) maintaining an interdisciplinary approach, and (e) building on existing connections.

 

Results: A 1-day event was developed, which included educational presentations, Question and Answer with an expert panel, group discussion, and group activities. The event was attended by 42 participants including 28 caregivers, 12 patients, and two siblings, representing 18 distinct family groups. Overall feedback for the event (response rate: 50%) was positive.

 

Discussion: The development of a family education and support event was found to be a valuable experience for providers, patients, and families. Families appeared to benefit from both the education provided and the opportunity to engage with others with similar lived experiences. Implications for future events include greater emphasis on opportunities for peer connections, greater emphasis on the adolescent experience, and expansion of included diagnoses.