"My Partner Just Wants to Sleep": A Qualitative Study of the Experience of Living with a Partner with Narcolepsy or Idiopathic Hypersomnia.

UNLABELLED: Narcolepsy and Idiopathic Hypersomnia (IH) are chronic sleep disorders that negatively impact the Health-Related Quality of Life (HRQoL) of those who are diagnosed with the disorders. As such, Narcolepsy and IH may also impact the HRQoL of those close to the patient (e.g. partners, parents).

AIM: This project explored the experiences of partners of people with Narcolepsy or IH, and examined how living with someone with the diagnosis had impacted their own HRQoL.

METHODS

In this in-depth qualitative study, semi-structured interviews were used to collect data from eight people (4 males and 4 females, aged between 21 and 53 years old) whose partners had Narcolepsy T1, T2, or IH. The data was analyzed using Reflexive Thematic Analysis (RTA) to find common themes emerging from the participants' narratives. Self-reports for psychological distress (K10) and sleep quality (PSQI) were used.

RESULTS

Five themes (and two 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.

CONCLUSIONS

Partners of patients with Narcolepsy or IH reported being affected by some of the symptoms of their partners' sleep disorder. Partners' social and emotional HRQoL were the features most strongly impacted by the disorders. Future research should focus on developing collaborative care models that involve patients' partners in treatment.