Early liver transplantation is essential for familial amyloidotic polyneuropathy patients' quality of life.

Nineteen patients, who had undergone liver transplantation for familial amyloidotic polyneuropathy, had answered a quality of life questionnaire including 61 questions on somatic and mental symptoms, social aspects of life, confidence and satisfaction before, one year, and two years after transplantation. We found that patient satisfaction was generally good two years or more after the transplantation. Most of the patients were very or quite satisfied with the result. All of them had the drive to go on and felt hopeful about the future. However, on the second follow-up, 37% of the patients noted that they felt more insecure in their everyday life and there was a significant difference between the two assessments. The diarrhea score became worse between one and two years after the transplantation and was closely related to the duration of the gastrointestinal symptoms and to the duration of the disease before transplantation. The mental symptoms also increased significantly between the evaluations and this related to the severity of the somatic symptoms. Our conclusion is that liver transplantation should be performed before advanced somatic symptoms start to develop in order to improve the patients' chances of a good quality of life following liver transplantation.

Waiting for a liver transplant: the experience of patients with familial amyloidotic polyneuropathy.

Liver transplant is a new treatment for familial amyloidotic polyneuropathy. The purpose of this phenomenological study is to describe the experience of waiting for a liver transplant from the familial amyloidotic polyneuropathy patients' perspective. Unstructured and open-ended interviews were conducted with 14 familial amyloidotic polyneuropathy patients and the analysis of data was inspired by Colaizzi's method. Waiting was found to involve two theme categories: waiting for a decision; and waiting for the operation. Seven themes were identified: bargaining with oneself; no influence/powerlessness; relief and joy; impatience; agony; time to prepare; and need for information and support. Implications for nursing practice, such as informational and emotional support, are discussed.

Family members' experience of familial amyloidotic polyneuropathy disease--an infernal struggle and a fact of life.

Familial amyloidotic polyneuropathy is a fatal, hereditary, systemic, progressive amyloidosis. No previous qualitative study of the family members' experience of the disease has been published. The purpose of this phenomenological study was to understand the lived experience of family members whose nearest and dearest suffered from familial amyloidotic polyneuropathy. In-depth interviews were conducted with six family members. The analysis of the data was inspired by Colaizzi's method. Two major theme categories, difficult to accept and forced to accept, emerged from the interviews. Implications for nursing practice, such as genetic counselling and support, are discussed.

Familial amyloidotic patients' experience of the disease and of liver transplantation.

Liver transplantation is a new treatment for familial amyloidotic polyneuropathy (FAP). No qualitative study examining these patients' experiences of the disease and the treatment has been published. The purpose of this study was to explore and describe the experience of the disease and the liver transplantation from the FAP patient's perspective. In-depth interviews with 11 liver transplant FAP patients were performed. The process of the FAP disease and a liver transplantation was found to involve the following categories: going downhill, defence and denial, a chance of surviving, the decision -- no choice, waiting powerless and uncertain, the first few steps after surgery, freed from the death sentence, still disabled, mastering up strength to recover, and the need for support and help.

[The interaction between the parkinsonian patient and his caregiver during feeding: a theoretical model]. / Interaktion zwischen dem Parkinson-Patienten und seiner Pflegeperson während des Essens: ein theoretisches Modell.

A theoretical model for the assessment of the interaction between the patient with Parkinson's disease and his caregiver during assisted feeding is suggested. It is based on literature about impairments in Parkinson's disease and about interaction. The main concepts of the model are clarity of cues, sensitivity, interpretation, responsiveness and synchrony. It is suggested that the patient should be allowed to focus on the socioemotional content versus the task content of communication during different phases of interaction during the meal.

Application of primary nursing within a team setting in the hospice care of cancer patients.

A qualitative study was conducted to obtain a deeper understanding of the hospice care of terminally ill cancer patients, where care was delivered via a primary nursing system combined with a team setting. Relatives of terminally ill cancer patients (n = 20) and the personnel (n = 8) participated in open-ended interviews. Phenomena relating to the philosophy of primary nursing and the hospice movement (continuity; closeness; accountability 24 h/day; individualized care; satisfied physical, psychological, social, and spiritual needs; and support to relatives) were experienced by the relatives, nurses, and physician as "good care." Most of the phenomena defined as important needs by the relatives and personnel were met when the primary nurse was on duty and the team was intact. Needs that were unmet were mainly a result of lack of continuity. Caring for the terminally ill via primary nursing in a team setting was regarded as two-sided by the nurses. It was seen as stimulating and rewarding, as well as demanding and burdensome. Therefore, the need for support to the nurses involved was deeply stressed.

Nurse turnover with special reference to factors relating to nursing itself.

Nurse turnover may decrease the quality of nursing care due to the loss of knowledge. It also results in high costs for the employer. Hence, the factors contributing to nurse turnover, if correctly understood, are important in order to know how to reduce it. This study aimed at exploring what contributing factors nurses who had decided to leave referred to concerning their decision to resign. A questionnaire was posted to all nurses who had left within one county council and 142 nurses responded. The most important factors behind the decision to leave turned out to be the following: difficult to implement changes, lack of influence and recognition, to much weekend and evening duty as well as the psychological burden inherent in nursing. The importance of the first three factors became significantly more important when those who remained in the geographical area were compared with those who moved or started to study. The findings support the idea that job satisfaction indirectly influences nurses turnover. However, it also points to the fact that what increases job satisfaction in nursing may need further research. Psychological burden for instance has not been taken into consideration before. In order to increase job satisfaction, thereby reducing nurse turnover, influence and recognition, lessening of the psychological burden and individually planned work schedules seem to be the most important factors.

Caregivers' perceptions and interpretations of severely demented patients during feeding in a task assignment system.

Ninety-one focused interviews concerning the feeding of 23 severely demented patients were performed with 62 caregivers who fed the patients in a task assignment system. The aim was to increase the understanding about how caregivers perceive and interpret severely demented patients' behaviour and experiences during feeding. Content analysis showed that the caregivers' commitment or lack of commitment constituted a superior level that determined whether the patient was seen as a subject or as an object. Subcategories that were found were knowledge of the patient's disease and personal history, intuition, identification, empathy, generalisation and routinisation.

Eating problems in severely demented patients. Issues and ethical dilemmas.

A review of the research on eating problems in severely demented patients gives the impression that, although the general prognosis is bad, there are a lot of things that can be done quite easily that could improve the eating situation for the patient. The most important task, it seems, is to approach the problems from a broad enough perspective to make it possible to treat the patient as a human being first and as a demented patient only secondarily.

Aberrant eating behavior in elderly parkinsonian patients with and without dementia: analysis of video-recorded meals.

Aberrant eating behavior among 14 elderly, non-demented and 10 demented patients with Parkinson's disease was studied by means of video-recordings. The findings revealed problems in handling food on the plate, transporting food into the mouth, manipulating food in the mouth, and swallowing. Interpretations were performed based on impairments of autonomic processes, perception, cognition, emotion, and motor performance that occur in the disease.

Feeding problems in severely demented patients seen from task and relationship aspects.

This study aimed at increasing the understanding of feeding problems in severely demented patients cared for in a task assignment system. Twenty-three video-recordings made during the feeding of 15 severely demented patients and 55 focused interviews with 45 caregivers, who fed the 15 patients during that period were analysed regarding the feeding problems seen from a task aspect and from a relationship aspect. The result indicated that the problems were partly of a more constant nature and partly fluctuated from meal to meal. Feeding problems regarding the task aspect were mentioned first by the caregivers in the interviews in spite of the fact that the patients had severe communication problems which could be expected to cause great problems in the relationship between the patient and his caregiver. Reasons for these findings are suggested.

Food refusal amongst nursing home patients as conceptualized by nurses' aids and enrolled nurses: an interview study.

One hundred and forty-three nurses' aids and 48 enrolled nurses at nursing homes in Sweden were interviewed about food refusal among patients. It became evident that their concepts of 'food refusal' and 'forced feeding' were very vague. This could partly be explained by the lack of knowledge among staff of how to interpret the frequent ambiguous eating behaviours among demented patients. It has been suggested that concept clarification and ethical analysis might reduce anxiety among staff caring for patients with severe eating problems.

The interaction between the parkinsonian patient and his caregiver during feeding: a theoretical model.

A theoretical model for the assessment of the interaction between the patient with Parkinson's disease and his caregiver during assisted feeding is suggested. It is based on literature about impairments in Parkinson's disease and about interaction. The main concepts of the model are clarity of cues, sensitivity, interpretation, responsiveness and synchrony. It is suggested that the patient should be allowed to focus on the socio-emotional content versus the task content of communication during different phases of interaction during the meal.

A model for the assessment of eating problems in patients with Parkinson's disease.

A model for the assessment of eating problems in patients with Parkinson's disease was constructed on the basis of literature about eating and Parkinson's disease. The model is based on the World Health Organization's classification of disabilities and handicaps and on the Erikson theory of 'eight stages of man'.