The article substantiates actuality of elaboration of the concept of development of palliative care of children and adolescents. The analysis of legislative and normative legal base, international documents, scientific studies related to this issue are analyzed. The situation in the regions ofthe Russian Federation is examined concerning organization of palliative care of children and its forms, provision of pharmaceuticals and specialized equipment and professional training of specialists. The demand of children population in palliative care in Russia is calculated according data of 2012. The results of carried out study are used as a basis of determining measures of development of system of palliative care of children and adolescents in the Russian Federation to propose as a foundation for the National concept as a necessary condition for organization of effective and efficient service.
The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term "palliative care". Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children.
To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was used in six universities. Descriptive statistics and regression analysis were used.
Some 371 students (67.3%) reported overall positive attitude toward caring for dying patients (total mean FATCOD 119.5, SD 10.6) early in their first semester. Older students, students with both earlier care experience and earlier education, those with experience of meeting a dying person, and students born in Sweden reported the highest scores, a more positive attitude.
Age, earlier care experience and education, experiences of meeting a dying person and place of birth seems to affect students' attitudes toward care of the dying and need to be considered among nursing educators.
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.
We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.
The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.
Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.
This survey found limited awareness of palliative care in an adult sample of the Swedish general public = 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
It has been observed that certain cancer symptoms frequently occur together. Prior research on symptom patterns has focused mainly on inpatients, early stage cancers, or a single cancer type or metastatic site. Our aim was to explore symptom clusters among outpatients with different advanced cancers.
Symptom scores by the Edmonton Symptom Assessment Scale (ESAS) were routinely collected for patients attending the Oncology Palliative Care Clinics at Princess Margaret Hospital from January 2005 to October 2007. Principal component analysis (PCA) was performed for the entire patient cohort and within specific disease sites to determine inter-relationships of the nine ESAS symptoms.
A total of 1,366 patients was included: 682 (50%) were male and 684 (50%) were female. The median age was 64 years (range 18 to 74 years). The most common primary cancer sites were gastrointestinal (27%), lung (14%), and breast (11%). The three most distressful symptoms were fatigue, poor general well-being, and decreased appetite. PCA of symptoms for the entire patient cohort revealed two major symptom clusters: cluster 1 included fatigue, drowsiness, nausea, decreased appetite, and dyspnea, which accounted for 45% of the total variance; cluster 2 included anxiety and depression, which accounted for 10% of the total variance. There was high internal reliability in the clusters (Cronbach's alpha coefficient approximately 0.80). PCA of symptoms within the various primary cancer sites revealed differences in the pattern of symptom clusters.
In patients with advanced cancers, distinct symptom clusters can be identified, which are influenced by primary cancer site. Treatments directed at symptom clusters rather than individual symptoms may provide greater therapeutic benefit. Further prospective studies are warranted in order to develop more effective targeted palliative interventions for the advanced cancer patient population.
Palliative care is increasingly organized within the setting of formal health care systems but the demarcation has become unclear between, on the one hand, care directed at cure and rehabilitation and palliative care aimed at relief of suffering on the other. With the purpose to increase the understanding about the turning point reflecting identification of dying and reorientation of care, this study explores this phenomenon as determined from health care records of a representative sample (n = 229). A turning point was identified in 160 records. Presence of circulatory diseases, sporadic confinement to bed, and deterioration of condition had a significant impact upon the incidence of such turning point. The time interval between the turning point and actual death ranged between one and 210 days. Thirty percent of these turning points were documented within the last day of life, 33% during the last 2-7 days, 19.5% during the last 8-30 days, 13% during the last 31-90 days, and 4.5% during the last 91-210 days of life. The time interval between the turning point and actual death was significantly longer among individuals with neoplasm(s) and significantly shorter among individuals suffering from musculoskeletal diseases. Perhaps this reflects a discrepancy between the ideals of palliative care, and a misinterpretation of the meaning of palliative care in everyday clinical practice. The findings underscore that improvement in timing of clinical identification of dying and reorientation of care will likely favour a shift from life-extending care to palliative care.
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.
A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.
A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children