Healthy Sleep Practices for Consumers of Home Total Parenteral Nutrition: A Mixed-Methods Community-Based Participatory Study

Adline Rahmoune; Christine Spadola; Bethany Johnson; Steve McCarthy; John Winkelman; Charlene Compher; Marion Winkler; Hassan S Dashti

doi:10.1016/j.cdnut.2024.102155

Healthy Sleep Practices for Consumers of Home Total Parenteral Nutrition: A Mixed-Methods Community-Based Participatory Study

Curr Dev Nutr. 2024 Apr 5;8(5):102155. doi: 10.1016/j.cdnut.2024.102155. eCollection 2024 May.

Authors

Adline Rahmoune¹, Christine Spadola², Bethany Johnson^{3

4}, Steve McCarthy⁴, John Winkelman⁵, Charlene Compher⁶, Marion Winkler⁷, Hassan S Dashti^{1

8

9}

Affiliations

¹ Department of Anesthesia, Critical Care and Pain Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, MA, United States.
² School of Social Work, University of Texas, Arlington, TX, United States.
³ Transplant Unwrapped, Flower Mound, TX, United States.
⁴ Patient Author.
⁵ Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, United States.
⁶ Biobehavioral Health Sciences Department, University of Pennsylvania School of Nursing, Philadelphia, PA, United States.
⁷ Department of Surgery, Rhode Island Hospital, Alpert Medical School of Brown University, Providence, RI, United States.
⁸ Division of Sleep Medicine, Harvard Medical School, Boston, MA, United States.
⁹ Division of Nutrition, Harvard Medical School, Boston, MA, United States.

Abstract

Background: Consumers of overnight home parenteral nutrition (HPN) often experience sleep disruption; however, existing healthy sleep recommendations are widely inapplicable to consumers.

Objectives: The aim of this mixed-methods, community-based participatory research study was to develop tailored recommendations on healthy sleep practices for HPN consumers.

Methods: The multipart study involved the following: 1) an initial draft of sleep recommendations based on the evaluation of existing general sleep hygiene guidelines by an expert panel of clinicians and consumers with lived experience; 2) semi-structured focus groups with consumers and clinicians; 3) pre- and post-knowledge tests completed by consumers, and 4) final approval of the recommendations by the expert panel.

Results: The literature synthesis resulted in 51 recommendations evaluated for relevance for HPN consumers. Focus groups with 20 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 existing general sleep hygiene guidelines, 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 consumers indicated a modest increase in sleep health knowledge.

Conclusions: The curated healthy sleep resource tailored for HPN consumers was 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. The wide distribution of these resources may improve the overall well-being of HPN consumers.

Keywords: Home parenteral nutrition; guidelines; mixed-methods study; nutrition; quality of life; sleep.