Experiences of community-living adults with pressure injuries: a qualitative systematic review with thematic synthesis

IMPORTANCE: Occupational therapy practitioners provide interventions to adults with pressure injury (PI) in their home. However, little is known about these adults' experiences of living with PI in the home environment. Current guidelines are biomedically focused and based on research primarily in hospital or institutional settings. OBJECTIVE: To synthesize experiences from qualitative studies of people living at home with PI. DATA SOURCES: Six databases were searched (CINAHL, ProQuest Central, Scopus, Cochrane Reviews, MEDLINE, and Embase). STUDY SELECTION AND DATA COLLECTION: Qualitative studies examining experiences of adults with PI living at home, published in English from 2000 to 2024, were included. Two researchers independently screened records for eligibility by title and abstract and by full text. Experiences were extracted from the studies and analyzed thematically. FINDINGS: Of the 2,245 records identified, 14 reporting experiences of living with PI at home met the inclusion criteria and were included. Six overarching themes described these experiences: (1) living with occupational deprivation; (2) living with pain, smell, and sleep deprivation; (3) living with fear, anxiety, and uncertainty; (4) finding ways to cope with grief and loss; (5) learning health self-efficacy and occupational balance; and (6) sharing the journey with health professionals. CONCLUSIONS AND RELEVANCE: Guidelines for practitioners working with adults with PI at home are urgently needed. Occupational therapy practitioners can intervene by supporting engagement in meaningful occupation, preventing occupational deprivation, and promoting occupational balance, particularly for adults requiring bedrest or activity restriction. Research should be expanded to include adults with cognitive impairment and palliative disease, children, and rural residents. 

PLAIN-LANGUAGE SUMMARY: This study aimed to understand the experiences of adults living at home with pressure injury because current guidelines are hospital focused. The study found that different guidelines are needed for care at home. Adults living with pressure injury at home are limited in their activities and experience pain, smell, sleep deprivation, anxiety, and uncertainty. They need to cope with grief, take charge of their health, and balance activity with rest. Health professionals can improve well-being by having definite home visit times, ensuring smooth and continuous care, and helping adults make their own decisions about pressure injury care. Occupational therapy practitioners should support meaningful activities, balance activity and rest, and match assistive technology to home needs. Alternatives to bedrest are needed, and pain and sleep issues need to be addressed. This study helps occupational therapy practitioners better understand the experiences of people living with a pressure injury at home and calls for more research with people with cognitive impairment or palliative conditions, as well as with children and people living in rural settings.