[Intensive care and home artificial ventilation. How do nurses experience artificial respiratory care in the home of patients?]. / Ambulante Intensivpflege und Heimbeatmung. Wie erleben Pflegekräfte die häusliche Heimbeatmung?

In Germany, the number of patients who receive artificial respiration in their own home is increasing. One reason for long time ventilation is the rise of technical possibilities. Bringing "intensive care" to the home of people challenges original understandings of home care. While intensive care and artificial respiration are technology-oriented, home-care is social-oriented, respecting the familiar environment of the patient. An international literature review reveals that research has been done by investigating the experiences of relatives and patients but not those of nurses. The few studies with a focus on nurses relate to themes of privacy and how to set limits. In Germany, not one study could be found that dealt with the question of how nurses experience artificial respiratory care in patients' homes. Considering the involved changes of care, the question rises, how nurses experience artificial respiratory care in the home of patients. This research is explorative and allows an insight into what home care is like when technology comes in. The exploration is based on eight narrative interviews with nurses who are experiencing respiratory care for patients in their home. The findings reveal professional challenges nurses have to face when caring for patients who are dependent on technological devices. The relatives are included in the caring activities and cooperating with them is crucial.

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.

[Necessity of co-operation of the community medical system based on the results from the survey by questionnaires-participation of the home healthcare and/or hospice systems in southern Tama community hospitals].

Home Care Division of Fujisawa Pharmaceutical Co. Ltd. has been providing the local public with the following services: 1) providing aseptic medicines prescribed in the clean room, 2) renting the infusion fluid pumps, and 3) supporting the community cooperation in healthcare services. Last year, we surveyed questionnaires to the public users (patients and caretakers) of these services, in order to understand the actual status of patients after changing from conventional hospitalization to the home infusion therapy (HIT). From the results of our present survey, it was found that the patients and their family members had positively accepted HIT, while 61% of the HIT users exhibited a strong anxiety in their skills and methods of HIT. Moreover, it was also shown that 61% had other means of nursing and treatment in addition to HIT, indicating a great financial burden on the families. Among them, 69% of the HIT users considered that visiting nurses and primary care physicians were the best co-operators, and changed their conventional healthcare system (hospitalization) to HIT. However, the home caretakers showed a high anxiety in their skill in the home healthcare system, specifically HIT, which was generally highly dependent on the medical care, Thus, a good relationship and co-operation with visiting nurses and primary care physicians was one of the major factors for the users to decide to choose HIT instead of their old medical hospitalization. Therefore, in order to make HIT more useful and widely prevail, it is concluded that establishment of the co-operative systems within our local community, where visiting nurses and primary care physicians can easily provide the patients and their family with professional suggestions, advice and actual care whenever the home caretakers need them.

Quality of life in long-term total parenteral nutrition patients and their family caregivers.

The purpose of this study was to identify individual and family variables associated with patient and caregiver quality of life. Perceived quality of life has been associated with improved outcomes and compliance. Methods included telephone interviews of 178 families, randomly selected from academic, hospital, and infusion agencies across the United States, with 116 follow-up questionnaires returned. Patients had varied bowel disorders requiring total parenteral nutrition for an average of 4.6 years. Patients were an average of 52.0 years old; caregivers averaged 52.5 years of age. Coded interview data indicated that caregivers assist patients daily (for a mean of 4.2 hours) and provide emotional support. Problems such as loss of friends, loss of employment, and depression were reported in two thirds of the families. Overall low quality of life was associated with length of time on total parenteral nutrition, fewer family coping skills, and inability to get along on income, whereas higher quality of life was associated with higher self-esteem and quality in the relationship. Preparing families for potential social problems or situations related to depression while also enhancing financial assistance, self-esteem, quality in the relationship, and coping skills may increase both patient and caregiver quality of life.

The home care alternative: a cancer survivor's story.

The difference that home care makes in the life of a cancer patient is communicated most strongly by an individual survivor. A social worker recalls her positive home cancer treatment and describes her quest to help others travel the same path.

Home total parenteral nutrition in a "no-bowel" patient in Spain.

OBJECTIVE: To report a case of a patient with no functional bowel who was receiving home total parenteral nutrition in a country that has had a few professional experiences in this area of therapy. CASE SUMMARY: A woman with a history of scattered colonic polyposis developed a mesenteric tumor that caused intestinal obstruction. Tumor withdrawal required the excision of 1.5 m of jejunum-ileum. Postoperative complications required further surgical intervention and subtotal intestinal resection. Duodenocolic anastomosis was not possible and a high output and permanent fistula remained. DISCUSSION: The complications of home parenteral nutrition addressed in the literature are reviewed. The problems encountered in our patient have been resolved. CONCLUSIONS: After three years of postoperative survival, we believe the quality of life of our patient has increased and the parenteral nutrition team members are much better prepared to manage patients with similar problems.