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

Abstract

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.

Disability and narrative medicine: Challenges and opportunities

“…In the 'Get It Write' project, pediatric patients and family members were encouraged to share their experiences by writing or telling stories. 41 The authors concluded that this was a reproducible approach that provided psychosocial support to patients and an excellent learning opportunity for medical students. The central role medical students played in sustaining this project was highlighted.…”

“…Another narrative medicine study involved partnering with pediatric patients with genetic disorders and their families. In the ‘Get It Write’ project, pediatric patients and family members were encouraged to share their experiences by writing or telling stories 41 . The authors concluded that this was a reproducible approach that provided psychosocial support to patients and an excellent learning opportunity for medical students.…”

Bringing narratives from physicians, patients and caregivers together: a scoping review of published research

“…Developing reflective capacity in physicians may foster improvements in empathy, communication, collaboration and professionalism16 25 34–42—skills that are central to the patient experience, quality of care, cost of care and physician burnout 39 43–45. Studies have also considered the increasing use of first-person written narrative among patients33 46 47 and caregivers,33 46 suggesting that it has an overall positive impact on mental and physical health36 and quality of life 46…”

Written reflection in an eHealth intervention for adults with type 2 diabetes mellitus: a qualitative study

“…29 The use of writing as a therapeutic approach has been examined in a variety of populations, including college students who are vulnerable to depression, cancer survivors, and individuals with chronic pain and various physical diseases, and findings indicate that this approach can improve treatment outcomes and quality of life. 30 – 33 In addition, a systematic review of interventions for women with breast cancer found that expressive writing can improve their physical health. 34 To our knowledge, written reflection has not been examined in the context of eHealth interventions, and the current study was designed to fill this gap in the literature.…”