Handing the pen to the patient: reflective writing for children and families affected by genetic conditions

Am J Med Genet A. 2014 Dec;164A(12):3021-6. doi: 10.1002/ajmg.a.36776. Epub 2014 Sep 24.


Genetic diagnoses impact the Quality of Life (QoL) of patients and their families. While some patients and families report a positive impact on QoL, others are affected negatively by a genetic diagnosis. No matter the impact, it is clear that social support is needed for this population. Genetic healthcare providers should be aware of the need for psychosocial support and be equipped to provide or direct patients and families to the appropriate resources. Reflective writing offers a unique opportunity for families and health care providers to engage in self-reflection and expression, activities which have the potential to enhance QoL in a positive manner. The therapeutic potential of writing has been studied in many populations, from caregivers of elderly individuals with dementia, to cancer survivors, to survivors of traumatic experiences. Some of these interventions have shown promise for improving participants' QoL. However, reflective writing has never been studied in patients and families affected by genetic conditions. We propose that reflective writing therapy is a feasible, reproducible, and enjoyable approach to providing psychosocial support for our patients. Get it Write is a reflective writing workshop pilot project for those who have a personal or family history of a genetic diagnosis. Our hypothesis is that reflective writing will help engender acceptance and alleviate feelings of isolation. Get it Write does not focus on the stressful factors in the participants' lives, rather it serves to facilitate interactions with peers facing the same struggles, and with medical students in a non-medical context.

Keywords: Get it Write; genetic syndrome; quality of life; reflective writing; reflective writing workshop; service learning; unaffected sibling; writing therapy.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Education
  • Family / psychology*
  • Genetic Diseases, Inborn / diagnosis
  • Genetic Diseases, Inborn / psychology*
  • Humans
  • Psychotherapy / methods*
  • Quality of Life / psychology*
  • Texas
  • Writing*