Documentation of older people's end-of-life care in the context of specialised palliative care: a retrospective review of patient records.

BACKGROUND: Palliative care focuses on identifying, from a holistic perspective, the needs of those experiencing problems associated with life-threatening illnesses. As older people approach the end of their lives, they can experience a complex series of problems that health-care professionals must identify and document in their patients' records. Documentation is thus important for ensuring high-quality patient care. Previous studies of documentation in older people's patient records performed in various care contexts have shown that such documentation almost exclusively concerns physical problems. This study explores, in the context of Swedish specialised palliative care, the content of documentation in older people's patient records, focusing on documented problems, wishes, aspects of wellbeing, use of assessment tools, interventions, and documentation associated with the person's death. METHODS: A retrospective review based on randomly selected records (n = 92) of older people receiving specialised palliative care, at home or in a palliative in-patient ward, who died in 2017. A review template was developed based on the literature and on a review of sampled records of patients who died the preceding year. The template was checked for inter-rater agreement and used to code all clinical notes in the patients' records. Data were processed using descriptive statistics. RESULTS: The most common clinical notes in older people's patient records concerned interventions (n = 16,031, 71%), mostly related to pharmacological interventions (n = 4318, 27%). The second most common clinical notes concerned problems (n = 2804, 12%), pain being the most frequent, followed by circulatory, nutrition, and anxiety problems. Clinical notes concerning people's wishes and wellbeing-related details were documented, but not frequently. Symptom assessment tools, except for pain assessments, were rarely used. More people who received care in palliative in-patient wards died alone than did people who received care in their own homes. CONCLUSIONS: Identifying and documenting the complexity of problems in a more structured and planned way could be a method for implementing a more holistic approach to end-of-life care. Using patient-reported outcome measures capturing more than one symptom or problem, and a systematic documentation structure would help in identifying unmet needs and developing holistic documentation of end-of-life care.

Nursing care for people with frontal-lobe dementia - difficulties and possibilities.

BACKGROUND: Nursing care for people with dementia diseases affecting the frontal lobes places special demands on staff, but there is little information available about how best to tailor nursing care. The aim of this study was to describe nurses' experience of difficulties and possibilities in caring for people with dementia diseases with frontal-lobe dysfunction. METHOD: The study was carried out as a descriptive qualitative study. Data collected during interviews with nursing staff (n = 10) were analyzed using qualitative content analysis. RESULTS: The difficulties experienced were related to the patients' lack of inhibition and judgment, anxiety, agitation, reduced ability to deal with physical needs, egocentricity, imbalance between rest and activity and depressed mood. The possibilities were seen in relation to the nursing staff's professional encounters, characterized as being clear and consistent, a step ahead, flexible, calm and creating a positive atmosphere, close and trusting and being and doing things together. Continuous feedback and support were prerequisites for the engagement of the staff. CONCLUSION: Nursing care in this context involves ethical issues whereby the residents' integrity must be balanced against a safe and secure environment. Nursing care is a sensitive but also demanding task, where nurses' actions can reduce the negative effects of the disease. It is therefore important to support staff in nursing care so they are able to manage their work and reduce the risk of emotional exhaustion.

Being victims or beneficiaries? Perspectives on female genital cutting and reinfibulation in Sudan.

Female Genital Mutilation (FGM) or the more value neutral term, Female Genital Cutting (FGC) is widely practised in northern Sudan, where around 90% of women undergo the most extensive form of FGC, infibulation. One new approach to combating FGC in Sudan is to acknowledge the previously hidden form of FGC, reinfibulation (RI) after delivery, when the woman is sewn back so much as to mimic virginity. Based on a qualitative study in Khartoum State, this article explores Sudanese women's and men's perceptions and experiences of FGC with emphasis on RI after delivery. The results showed that both genders blame each other for the continuation of the practices, and the comprehensive understanding of the perceptions and experiences was that both the women and the men in this study were victims of th e consequences of FGC and RI. The female narratives could be understood in the three categories: viewing oneself as being "normal" in having undergone FGC and RI; being caught between different perspectives; and having limited influence on the practices of FGC and RI. The male narratives could be understood in the three categories: suffering from the consequences of FGC and RI, trying to counterbalance the negative sexual effects of FGC and striving in vain to change female traditions. The results indicate that the complexity of the persistence of FGC and RI goes far beyond being explained by subconscious patriarchal and maternalistic actions, related to socially constructed concepts of normality, female identity,tradition and religion a"silent" culture betweenmen and women.

Being in the light or in the shade: persons with Parkinson's disease and their partners' experience of support.

Interviews with six couples, persons with Parkinson's disease and their partners, were tape-recorded, transcribed and analysed using manifest and latent content analysis. The couples' experiences could be interpreted as Being in the light and Being in the shade of support, with internal variations for the patients and their partners. The narratives also revealed that the disease meant a transition of roles in their relation seen in different patterns: From unity towards unity, From unity towards distance and From distance towards unity. The results indicate that there is a need for more specialised and individually adjusted support.

Evaluation of ontology merging tools in bioinformatics.

Ontologies are being used nowadays in many areas, including bioinformatics. One of the issues in ontology research is the aligning and merging of ontologies. Tools have been developed for ontology merging, but they have not been evaluated for their use in bioinformatics. In this paper we evaluate two of the most well-known ontology merging tools with a bioinformatics perspective. As test ontologies we have used Gene Ontology and Signal-Ontology.

Actions seen as demanding in patients with severe dementia during one year of intervention. Comparison with controls.

Behaviours, viewed by nurses as demanding, performed by patients with severe dementia were investigated during one year of intervention. Supervised implementation of individually planned care and systematic clinical supervision were implemented on one experimental ward (EW) while another ward (CW) served as control. Each ward had 11 patients. At baseline and after 6 and 12 months of intervention structured interviews with the patients' assigned nurses were conducted based on the Demanding Behaviour Assessment Scale and Multi Dimensional Dementia Assessment Scale. At the EW there was a decreased frequency (p=0.000) and a reduced occurrence of physical behaviours (p=0.008), a decreased frequency (p=0.029) and a reduced occurrence of vocal behaviours (p=0.002). No significant changes were seen at the CW. Bearing the small sample size in mind, the findings indicate that individually planned care and systematic clinical supervision could be a means of reducing the frequency, and/or effect the nurses' attitude and interpretation of the patients' behaviour as demanding. The findings, however, can only be seen as indications for further research, but point to the importance of including effect variables related to patients when intervening in nursing care.

Nursing students' experience of their first professional encounter with people having mental disorders.

The aim of the study was to generate a theoretical model of what nursing students experience in their first professional encounter with people having mental disorders. Data was collected by interviewing 11 nursing students, selected by strategic sampling. Grounded theory analysis was chosen for the study. Findings showed that the students' personal qualities and the patients' behaviour affected the students' experience. When nursing students who had their own needs in focus met patients who rejected them, they felt helpless, and patients wishing to establish a relationship with them confirmed their positive or negative expectations. Nursing students who were focused on patients' needs met the patient as a unique person and felt confident despite being rejected by the patient, as well as proud when the patients wished to establish a relationship with them. Clinical university teachers can use the findings to gain knowledge about how each student feels as well as to guide them through their psychiatric training. The sample is small and further research is needed to generalize the findings of this study and to explore how nursing students, specialist psychiatric nurses and nurses in other disciplines experience the encounter with patients as well as how patients describe encounters with caregivers.

Assessment by nurses of mood, general behaviour and functional ability in patients with dementia receiving nursing home care.

The aim of this study was to investigate the reliability of the Patient Mood Assessment Scale (PMAS), the General Behaviour Assessment Scale (GBAS) and the Gottfries Bråne Steen scale and to investigate mood, general behaviour, degree of dementia and symptoms for patients with dementia living permanently in nursing home care (n = 75). Interviews were conducted with the contact nurses, focussing on their view of the patients during the preceding week, based on the above-mentioned assessment scales. In 29 cases a second interview was conducted with another nurse in order to investigate the inter-rater reliability. The inter-rater reliability was high for items associated with ADL and intellectual functions, but low for items associated with emotional aspects. The nurses' difficulties in assessing the patients' emotional state could arise because these matters are not regularly discussed among the staff or could reflect the nurse's inner state rather than that of the patient. The varying understanding that the nurses had of the patients raises the question of whether the care provided is based on the nurses' opinions rather than on the patients' needs. There is a need for continuous and reflective discussions in the staff group, focusing on the patients' physical as well as emotional needs.

Mood and general behavior of patients with severe dementia during one year of supervised, individualized planned care and systematic clinical supervision. Comparison with a similar control group.

The aim of this study was to evaluate the effects of one year of systematic clinical supervision, and supervised individually planned care on the mood and general behavior of patients with dementia in relation to their cognitive function and level of confusion. The intervention was carried out in a ward devoted to the care of patients with severe dementia (EW), with a similar ward (CW) where no changes were made serving as a control. Each ward housed 11 patients, of whom 7 patients in each ward survived throughout the study time. Assessment of the patients' mood, general behavior, cognitive functions (MMSE), orientation and confusion (OBS) was made at baseline, and after 6 and 12 months of intervention. Significant deteriorations for the patients in CW were seen during the study period as regards the factor strength, functional performance and orientation in the ward, and speech performance and psychomotor slowing. For the patients in the EW, deterioration was seen only in the factor accessibility, and improvement was seen in the factor sensitivity and euphoria. The differences indicated that the development in the two wards went in opposite directions to the benefit of the patients in the EW. Because of the small sample size, the findings are more the result of a pilot trial, rather than generalizable. The intervention, however, seemed to have a positive effect on the secondary symptoms of the disease.

Effects of clinical supervision on nurse-patient cooperation quality: a controlled study in dementia care.

An intervention consisting of individualized planned care for patients and regular clinical systematic supervision for nurses was carried out on a ward for dementia care (the experimental ward, EW). On a similar control ward (CW), no changes were made. Observations of nurse-patient cooperation during morning care were collected at both wards, before and during the intervention. The observations (N = 107) were analyzed blindly and sorted into already-developed categories. The distribution of the cooperation-style categories was then analyzed statistically. The patients who survived throughout the study period (N = 18) were also compared over time. Nurse-patient cooperation at the EW improved significantly during the intervention period, whereas, at the CW, it deteriorated (p = .02). Status of surviving patients followed the same pattern (p = .001). The findings indicate that such interventions can improve the quality of nurse-patient cooperation in dementia care.

Cooperation during morning care between nurses and severely demented institutionalized patients.

Nurse-patient cooperation during morning care in two wards for the care of severely demented patients (107 observations) were analyzed by using a hermeneutic-phenomenological approach. Nurse-patient cooperation was found to be characterized by their acting in mutuality or unilaterality and in or out of pace with each other. When acting iri pace and mutuality, the nurse and patient turned to each other as persons as well as to the task. This theme related to confirming nurse actions and actions that provided opportunities for the patient to participate. When acting out of pace and unilaterality, cooperation was mainly task oriented and related to acts of resistance, the use of force, loss of attention or turning to others, or the patient wanted to escape. The findings were interpreted within the contexts of power, empowerment, and powerlessness and may serve as indicators of low- or high-quality nurse-patient cooperation during morning care provided for demented patients.

Initiating and terminating verbal interaction between nurses and severely demented patients regarded as vocally disruptive.

The care of demented patients requires clear communication during care procedures. Earlier studies have shown that nurses were often vague in their verbal communication and unpublished observations indicated that in some cases demented patients continued to be verbally active after the nurses had left. This study aimed at exploring further the initiating and terminating phases of verbal interaction episodes between nurses and severely demented patients, to explore any relationship between nurses' communication style and vocally disruptive patients. Nine severely demented patients identified as vocally disruptive were tape-recorded between 07.00 h and 13.00 h. Any nurse-patient interaction episode lasting more than 30 s (n = 58) during care procedures was transcribed verbatim and its verbal communication activity was analysed for content and meta communication, and a communication index was calculated. The results showed strong task orientation and decreased verbal interaction during the course of the interaction. The data supported the assumption that the nurses' communication style increases or decreases patients' vocal activity. Vocal activity after the actual interaction episode seemed to coincide with the parties' communication on various levels, with a different focus of content, and with several nurses being involved in the same procedure. Nurses may become impatient and stressed by their patients' severe communication problems and therefore need to be relieved of this stress and supported so that they can remain close to the patient and be able to interpret his/her communication.

Side effects of iron supplements in blood donors: superior tolerance of heme iron.

Regular blood donors were enrolled in a double-blind, parallel group study to evaluate the side effects of two iron supplements, one containing both heme iron and non-heme iron (Hemofer, 2 tablets = 18 mg iron/day), the other non-heme iron only (Erco-Fer; 1 tablet = 60 mg iron/day). No differences were found between the two alternatives in regaining predonation iron status as measured by serum ferritin and hemoglobin levels. Despite this therapeutic equivalence, participants' symptom diaries showed substantial differences in the side effects for the two treatments. The frequency of constipation (p < 0.05) and the total incidence of all side effects (p < 0.01) were significantly higher for non-heme iron when compared with the heme iron-non-heme iron combination and a placebo. The study demonstrates that a low-dose iron supplement containing both heme iron and non-heme iron (Hemofer) has fewer side effects when compared with an equipotent, traditional non-heme iron supplement.