Healthy sleep practices for consumers of home total parenteral nutrition: a mixed-methods community-based participatory study

Background & Aims Consumers of overnight home parenteral nutrition (HPN) often experience sleep disruption, however existing healthy sleep guidelines are widely inapplicable to HPN consumers. The aim of this mixed-methods, community-based participatory research study was to develop tailored recommendations on healthy sleep practices for HPN consumers. Methods To develop tailored healthy sleep practices for consumers, the multi-part study involved: 1) an initial draft of sleep recommendations based on the evaluation of existing general sleep hygiene recommendations by an expert panel; 2) semi-structured focus groups with consumers and clinicians; 3) pre– and post–sleep knowledge tests by community members for further evaluation, and 4) final approval of the recommendations by the expert panel. Results The literature synthesis resulted in 51 recommendations evaluated for HPN consumers. Focus groups with 19 HPN consumers and clinicians contributed additional recommendations based on lived experience. Ultimately, the final resource included recommendations spanning 4 sections: getting ready for bed, preparing the bedroom for sleep, daytime behaviors, and overall strategies for better sleep. Of the 36 recommendations, 58% were derived from general sleep hygiene, and the remaining 42% addressed sleep challenges experienced uniquely by consumers including nocturnal polyuria, noise/light from medical equipment, and infusion schedules. Knowledge tests completed by 10 additional HPN consumers indicated a modest increase in sleep health knowledge. Conclusion We curated the first set of healthy sleep practices tailored for HPN consumers facilitated by a multidisciplinary expert panel, a strategic collaboration with members of the HPN community and their clinicians, and in partnership with patient advocacy and support organizations. We anticipate that the wide distribution of these resources will improve the overall well-being of HPN consumers.