O081 “My partner just wants to sleep”: A qualitative study of the experience of living with a partner with Narcolepsy or Idiopathic Hypersomnia.

Abstract

Abstract Introduction Narcolepsy and Idiopathic Hypersomnia (IH) are chronic sleep disorders that negatively impact sufferers’ Health-Related Quality of Life (HRQoL) across physical, emotional, and social functioning. Narcolepsy and IH may also impact the HRQoL of those close to the patient (i.e., partners, parents). This project explored the experiences of partners of people with Narcolepsy or IH, including how living with someone with the diagnoses had impacted their own HRQoL. Methods In this qualitative study, a semi-structured interview was used to collect data from 8 partners of people with Narcolepsy T1, Narcolepsy T2 and IH. The data were analyzed using Reflexive Thematic Analysis to find common themes emerging from the participants’ narratives. Results Five themes (and 2 sub-themes) were identified: 1) changes in dyadic identity; 2) negative impact on intimacy; 3) loneliness; 4) sacrifices to maintain the relationship, and 5) dissatisfaction at the lack of knowledge and information among (a) the general public, and (b) health professionals. Conclusions This novel, exploratory study identified several themes of social and emotional functioning most impacted by a partner’s sleep disorder diagnosis; themes which correspond with the areas shown to be negatively affected in patients. Psychosocial interventions for Narcolepsy and IH should include patients’ partners to reduce the impact of the diagnoses on the family system, and improve overall HRQoL.