An exploration of quality of life and the experience of living with home parenteral nutrition.

INTRODUCTION: The aim of this research was to achieve a deeper understanding of the experience of adults living with home parenteral nutrition (PN) and to define their quality of life (QOL). METHODS: The research design was qualitative, using content and interpretative phenomenological analysis. The sample included adults with intestinal failure, stratified by length of home PN dependency. Sampling continued until data saturation was achieved. A second reviewer independently coded a subset of narratives (kappa = 0.684). RESULTS: Participants included 24 adults receiving home PN because of short bowel syndrome (95.8%) and pseudo-obstruction (4.2%). Twenty-five percent received PN for < 2 years, 20.8% for 2-5 years, 25% for 5-10 years, and 29.2% for > 10 years. Respondents viewed home PN as a "lifeline" and "nutritional safety net." QOL was defined as "enjoying life"; "being happy, satisfied, or content with life"; and "being able to do what you want to do, when you want to do it." Participants described their QOL as "good" to "wonderful." Lifestyle was affected by health, stamina, diarrhea, having an ostomy, and the amount of flexibility there was with the infusion schedule. There was a strong desire to achieve normalcy in life among all participants. CONCLUSIONS: Qualitative methodology provides new insights and richness of data regarding adults receiving home PN. The positive description of QOL in this study contrasts with the published nutrition literature. It is important for healthcare practitioners to understand and discuss the realities of home PN and lifestyle adaptation.

Home care in the last year of life: family member perceptions of unmet need associated with last place of care.

OBJECTIVE: To examine the association of family members' perception about the adequacy of home health services at the last place of care before death. DESIGN: Retrospective cross-sectional study. Mortality follow-back survey by telephone interview. SETTING: Home health services. PARTICIPANTS: Bereaved family members or knowledgeable informants of deceased persons in 22 states. MEASUREMENTS: Proxy perception of need of home health care during the last 12 months of decedent's life, whether the amount of care received was enough, and last place of care (ie, where the person spent at least 48 hours nearest to the time of death). RESULTS: Of the 1578 interviews, 622 informants reported that decedents needed home health care in the last year of life. Among decedents needing home health care, 144 informants reported that the home health services provided did not meet their needs. After adjusting for age, gender, insurance, education, race, cause of death, functional status, and place of residence, decedents reported as not receiving enough home health care were 1.8 (95% CI 1.1-2.9) times more likely to die in a nursing home. CONCLUSION: The perception that home health services before death did not meet the decedent's needs may contribute to greater nursing home use.