Pain in pediatric oncology-A Swedish nationwide follow-up study among nurses and physicians.

To examine nurses' and physicians' assessments of pain in children with cancer, and to identify the methods in use to diagnose, evaluate, and treat pain. In addition, to examine whether/how the healthcare professionals' assessment and management of pain has changed compared to 1995 and identify the needs for training. The study has a descriptive and comparative design. 363 nurses and physicians working with children with cancer in Sweden were invited to participate in April 2017. Participants answered an updated version of a questionnaire used in 1995 by Ljungman et al. focusing on the healthcare professionals' experience of pain among their patients, their pain treatment strategies, and need for training. 120 nurses and 65 physicians participated. Fifty percent of nurses and 55% of physicians answered that moderate-to-severe pain was experienced often or very often by children with cancer. Methods recommended in international guidelines to diagnose, evaluate, and treat pain were generally followed. Compared with findings from 1995 by Ljungman et al., nurses, and physicians assessed that moderate-to-severe pain was seen more often. The greatest need for training was reported for pharmacology, different routes for administration of opioids, treatment with nitrous oxide, and nonpharmacological interventions. Nurses and physicians assessed that moderate-to-severe pain is often present in children with cancer. More time to treat pain in the department and training in certain areas seem to be needed to improve pain management.

The relationship between fear and pain levels during needle procedures in children from the parents' perspective.

BACKGROUND: The primary objective was to determine the levels of and potential relationships between procedure-related fear and pain in children. Secondary objectives were to determine if there are associations between the child's age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol levels and the parent's fear level in relation to fear and pain. METHODS: The child's level of pain and fear was reported by parents on 0-100 mm visual analogue scales (VAS). One hundred and fifty-one children were included consecutively when undergoing routine needle insertion into a subcutaneously implanted intravenous port. All children were subjected to one needle insertion following topical anaesthesia (EMLA) application. The effect of the child's age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol change levels and the parent's fear level, on fear and pain levels was investigated with multiple regression analysis. RESULTS: The needle-related fear level (VAS mean 28 mm) was higher than the needle-related pain level (VAS mean 17 mm) when topical anaesthesia is used according to parents' reports (n = 151, p < 0.001). With fear as the dependent variable, age and pain were significantly associated and explained 33% of the variance, and with pain as the dependent variable, fear, parents' fear and change in cortisol level were significantly associated and explained 38% of the variance. CONCLUSIONS: According to parents, children experienced more fear than pain during needle insertion when topical anaesthesia is used. Therefore, in addition to pain management, an extended focus on fear-reducing interventions is suggested for needle procedures.

Effect of high-dose paracetamol on needle procedures in children with cancer--an RCT.

AIM: The aim was to investigate whether children experience less pain, fear and/or distress when they receive high-dose paracetamol compared with placebo, using a needle insertion in a subcutaneously implanted intravenous port as a model. METHODS: Fifty-one children ranging from 1 to 18 years of age being treated in a paediatric oncology setting were included consecutively when undergoing routine needle insertion into a subcutaneously implanted intravenous port. All children were subjected to one needle insertion following topical anaesthetic (EMLA) application in this double-blind, placebo-controlled RCT, comparing orally administered paracetamol (n = 24) 40 mg/kg body weight (max 2000 mg) with placebo (n = 27). The patients' pain, fear and distress were reported by parents, nurses and children (≥7 years of age) using 0- to 100-mm visual analogue scales (VAS). In addition, pain observation, procedure time and cortisol reduction were assessed. RESULTS: No differences between the paracetamol and the placebo group were found with respect to demographic characteristics. According to VAS reports, paracetamol did not reduce pain, fear and distress compared with placebo. Pain observation, cortisol reduction and procedure time did not differ between the study groups. CONCLUSION: Paracetamol provides no additive effect in reducing pain, fear and distress when combined with topical anaesthesia in children undergoing port needle insertion.

Findings on how adolescents cope with cancer--a matter of methodology?

OBJECTIVES: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease- and treatment-related distress in response to closed- and open-ended questions, respectively. METHODS: Adolescents diagnosed with cancer 4-8 weeks ago (N=56) answered closed- and open-ended questions over the telephone about which coping strategies they use to cope with physical concerns, personal changes, feelings of alienation, and worries. RESULTS: In response to closed-ended questions, most adolescents reported using emotion-focused coping (Accepting and Minimising) while, in response to open-ended questions, meaning-based (i.e. Positive thinking) and problem-focused (i.e. Problem solving) coping were most often mentioned. A majority reported using Minimising and Seeking support in response to closed-ended questions, but very few adolescents mentioned using these strategies in response to open-ended questions. CONCLUSIONS: Adolescents' reports of how they cope with disease- and treatment-related distress vary depending on antecedent closed- and open-ended questions. Responses to closed-ended questions appear to be more indifferent to aspects of distress than responses to open-ended questions. Strategies representing meaning-based coping should be included in future studies investigating how adolescents recently diagnosed with cancer cope with disease- and treatment-related distress.

Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival.

BACKGROUND: To, during the acute and extended phase of survival, identify psychosocial states among adolescents diagnosed with cancer and to analyse these in relation to demographic and clinical characteristics and self-reported depression. PATIENTS AND METHODS: Participants completed the Hospital Anxiety and Depression Scale and two subscales, Vitality and Mental Health, in the SF-36 4-8 weeks (T1) (n = 61), 6 (T2) (n = 57), 12 (T3) (n = 50), and 18 (T4) months (n = 48) after diagnosis. I-State as Object of Analysis was used to identify a finite set of states based on three dimensions. Cluster analysis was carried out using Ward's method. RESULTS: Five states were obtained: psychosocial dysfunction (state A) and poor (B), incomplete (C), good (D), and excellent (E) psychosocial function. At T1, more adolescents than expected by chance were in states A (P < 0.05) and C (P < 0.01) and fewer in states D (P < 0.05) and E (P < 0.001). At T4, more adolescents than expected by chance were in state E (P < 0.001) and fewer in state C (P < 0.05). Female gender and being in late adolescence when diagnosed is related to worse psychosocial function. CONCLUSION: The findings provide support for subgroups of adolescents whose level of vitality, mental health, and anxiety differ during the acute and extended phase of survival of cancer. Clinical interventions tailored to the level of impairment as determined by the clusters may result in better psychosocial outcomes.

Randomized interventions for needle procedures in children with cancer.

The aim of this study was to examine whether children experience less fear, distress and pain connected to a routine needle insertion in an intravenous port when subjected to an intervention: blowing soap bubbles or having a heated pillow vs. standard care. Twenty-eight children, 2-7 years, cared for at a paediatric oncology unit, undergoing a routine needle insertion in an intravenous port were included consecutively. All children were subjected to two needle insertions; at the first they received standard care, and at the second standard care + a randomized intervention. Parents and nurses assessed children's fear, distress and pain on 0-100 mm visual analogue scales. According to parents' report, children experienced less fear when subjected to intervention vs. standard care reported by parents (P < 0.001). Children also experienced less fear (P < 0.05) and distress (P < 0.05) when subjected to standard care + blowing soap bubbles vs. standard care (n = 14), and less fear when subjected to standard care + heated pillow vs. standard care (P < 0.05). Nurses' reports did not show any differences for standard care + intervention vs. standard care. Blowing soap bubbles or having a heated pillow is more effective than standard care in reducing children's fear and distress in needle procedures, according to parents' report.

Perceptions of support among Swedish parents of children on cancer treatment: a prospective, longitudinal study.

Given the important role of parents in ensuring the well-being of their children, their perceived support is crucial for their own, as well as their child's well-being. Perceptions of support were investigated among 214 Swedish parents of 115 children on cancer treatment. Parents answered questions about their satisfaction with their child's care (The Comprehensive Satisfaction with Care, Short Form, Version 4.0 (CASC SF 4.0)) and about their need, opportunity and benefit to talk to health professionals, significant others and other people. Data were collected over telephone at 1 week (T1), 2 (T2) and 4 (T3) months after the child's diagnosis. Parents reported at least moderate satisfaction with all aspects of their child's care, and highest satisfaction with the technical care. Less than half of the parents who reported a need to talk with a psychologist at T1-T3 reported having had the opportunity to do so. The care organization, doctors' interpersonal skills, information provision and availability, nurses' information provision and the availability of psychologists are areas within Swedish paediatric oncology care for which improvement most obviously is needed.

Are there any positive consequences of childhood cancer? A review of the literature.

The aim was to investigate whether there are any positive consequences of childhood cancer. Studies published 1990-2005 reporting survivors' descriptions of positive consequences of childhood cancer were identified through a search in the databases CINAHL, PsycINFO, and PubMed. According to a manifest content analysis, positive consequences were referred to three themes: life values, relations to others, and relation to self. A second search in the same databases was conducted to identify studies investigating whether survivors of childhood cancer differ from comparison groups with regard to variables assigned to these themes. In these studies, no conclusions about positive consequences with regard to the theme life values can be drawn, as only one study was identified. In addition, only a small minority of findings from comparative studies indicate that childhood cancer has any positive consequences with regard to relations to others and relation to self. A majority of the results indicate that survivors do not differ from comparison groups, whereas some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. It is recommended that survivors of childhood cancer are followed up by a multi-professional team, focusing not only on the survivors' health status but also on relations to family, friends, and partners.

Are importance-satisfaction discrepancies with regard to ratings of specific health-related quality-of-life aspects valid indicators of disease- and treatment-related distress among patients with endocrine gastrointestinal tumours?

The aims of this study were to investigate: (1) whether ratings of importance of, satisfaction with, and symptom/function of specific health-related quality-of-life (HRQoL) aspects are related, and (2) whether an importance-satisfaction discrepancy with regard to ratings of a specific HRQoL aspect is a valid indicator of distress. Eighty-three patients with endocrine gastrointestinal tumours completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and answered questions about importance of, satisfaction with, and symptom/function of 12 HRQoL aspects. The patients reported a relatively high HRQoL in terms of physical, emotional and social function. Most of the HRQoL aspects were considered as important for a good quality of life. High satisfaction was related to fewer symptoms and a better function. Patients who assigned a higher importance than satisfaction rating to an aspect reported a lower quality of life for the same aspect. The findings suggest that importance-satisfaction discrepancies are valid indicators of patient distress and illustrate the importance of asking patients not only about frequency and level of symptoms, but also about importance of and satisfaction with when assessing patient quality of life.

Positive and negative consequences with regard to cancer during adolescence. Experiences two years after diagnosis.

OBJECTIVES: The purpose was to explore negative and positive consequences of cancer during adolescence experienced two years after diagnosis. METHODS: Two years after diagnosis 38 persons, 15-21 years old, were asked two questions over the telephone: What, if anything, is bad for you due to the cancer disease? and What, if anything, is good for you due to the cancer disease? The answers were analysed by content analysis. RESULTS: Four categories of negative experiences were identified: a problematic body; unpleasant thoughts and feelings; outside the circle of friends; and difficulties with schoolwork. Six categories of positive experiences were identified: a more positive view of life; good self-esteem; knowledge and experience with regard to disease and hospital care; good relations; broader perspectives; and material gains. CONCLUSIONS: Two years after diagnosis those struck by cancer during adolescence experience not only a number of negative, but also positive, consequences of the cancer disease and its treatment.

Psychiatric care behind locked doors. A study regarding the frequency of and the reasons for locked psychiatric wards in Sweden.

The general aim was to describe the frequency of and the reasons for locked doors at wards within Swedish psychiatric care. A questionnaire was answered by 193 ward managers. The findings demonstrated that 73% (n = 193) of the wards were locked on the day of investigation. Wards were sometimes locked in the absence of committed patients and sometimes open in the presence of committed patients. Wards were more often locked if at least one committed patient was present. Fewer wards for children and adolescents, than for adults and old people, were locked. More wards in the areas of Sweden's three largest cities, than in the rest of the country, were locked. Fourteen categories of reasons for locking wards were generated by a content analysis of answers to an open-ended question. Most answers were categorized as: prevent patients from escaping, legislation, provide patients and others with safety and security, prevent import and unwelcome visits, and staff's need of control. Staff working in psychiatric care ought to reflect upon and articulate reasons for, and decisions about, locking or opening entrance doors, with the limitation of patients' freedom in mind.

Is doctors' ability to identify cancer patients' worry and wish for information related to doctors' self-efficacy with regard to communicating about difficult matters?

The aims were to investigate whether: (A) doctors' ability to identify patients' worry about prognosis/wish for information about disease and treatment is related to doctors' self-efficacy with regard to communicating about difficult matters and patients' satisfaction with a consultation/hope to live a good life in spite of the disease; and (B) patients and doctors agree on how much worry/wish for information a patient experiences/wishes. Sixty-nine patients with carcinoid and 11 doctors participated. Ability to identify worry/wish for information was estimated by posing questions to doctors/patients concerning how much worry/information a patient experienced/wished during a consultation. Doctors' self-efficacy was measured by nine questions, patients' satisfaction and hope by two questions. When doctors show good ability to identify wish for information, they report higher self-efficacy (t = 3.5, d.f. = 67, P < 0.001) than when they show less good ability. Patients finding the consultation very satisfying meet doctors reporting higher self-efficacy than patients finding the consultation satisfying (t = 2.26, d.f. = 65, P < 0.05). Doctors fail to identify patients who report less worry/wish more information than the average patient. The findings underscore the importance of further enhancing doctors' self-efficacy with regard to communicating about difficult matters and ability to identify patients who are less worried/wish more information than the average patient.

Psychiatric wards with locked doors--advantages and disadvantages according to nurses and mental health nurse assistants.

AIMS AND OBJECTIVE: To describe nurses' and mental health nurse assistants' perceptions of advantages and disadvantages about working on a psychiatric ward with a locked entrance door. BACKGROUND: Psychiatric staff sometimes needs to protect patients from harming themselves or others. To keep the entrance door locked may help staff to achieve this goal. How locked entrance doors at psychiatric wards are experienced by staff, working on these wards, has been investigated to a very limited extent. DESIGN: The study was explorative and descriptive. METHOD: Audio taped, semi-structured interviews with open-ended questions about advantages and disadvantages about working on a psychiatric ward with a locked entrance door, were conducted with 20 nurses and 20 mental health nurse assistants. Data were analyzed with content analysis. RESULTS: A content analysis revealed eight categories of advantages and 18 categories of disadvantages. Most advantages mentioned by nurses and mental health nurse assistants were categorized as providing staff with control over patients, providing patients with a secure and efficient care and protecting patients and staff against 'the outside'. Most disadvantages mentioned by nurses were categorized as causing extra work for staff, making patients feel confined, making patients feel dependent and creating a non-caring environment. Most disadvantages mentioned by mental health nurse assistants were categorized as causing extra work for staff, making patients feel confined, causing emotional problems for patients, making staff's power obvious and forcing patients to adapt to other patients' needs. Nurses and mental health nurse assistants mentioned more disadvantages than advantages and nurses mentioned more disadvantages than mental health nurse assistants. CONCLUSION: Nurses and mental health nurse assistants perceive a number of advantages and disadvantages for themselves, patients and significant others with a locked door at a psychiatric ward. Most of these concern patients' experiences. RELEVANCE TO CLINICAL PRACTICE: It is important for staff working within psychiatric care to reflect upon the fact that a locked entrance door is connected with a range of negative as well as positive perceptions and to minimize patient and own concerns connected to the locked door.

Medication administration in inpatient psychiatric care--get control and leave control.

The aim of this mini-ethnographic study was to describe medication administration (MA) in short-time inpatient psychiatric care. MA was observed on two psychiatric wards. Field-notes were taken and interviews were conducted with 15 voluntarily admitted patients and nine nurses. The data analysis was conducted as a dialectical and interactive process. Two central categories were generated: get control and leave control, and two subcategories: interpersonal contact and nurses' knowledge. The patients left control over medication to the nurses and expressed gratefulness for the opportunity to do so. Interpersonal contact between patients and nurses and nurses' knowledge were of importance for the possibility for the nurses to get control and for the patients to leave control. MA is a complex task with an importance beyond giving the right pill to the right patient, and provides patients with an opportunity to communicate with the nurses.

Distress, quality of life and strategies to 'keep a good mood' in patients with carcinoid tumours: patient and staff perceptions.

Patients with carcinoid tumours have reported a relatively good health-related quality of life (HRQoL) (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, EORTC QLQ-C30), and low levels of anxiety and depression (Hospital Anxiety and Depression Scale, HADS). The aim was to test the validity of these results. Data were gathered through interviews with 19 patients and 19 staff. Participants were asked about disease and treatment related distress, important aspects of quality of life and strategies to 'keep a good mood'. Patients were interviewed about themselves and staff were interviewed about a certain patient. Data were analysed by content analysis. Identified aspects of distress and quality of life were referred to an emotional, a physical and a social dimension. Most aspects of distress were of a physical character whereas most aspects of quality of life were of a social character. Several aspects of emotional distress not included in the EORTC QLQ-C30 and/or the HADS were identified.

Forced medication in psychiatric care: patient experiences and nurse perceptions.

The aims of this study were to describe: patient experiences of and nurse perceptions of patient experiences of forced medication before, during and after forced medication; patient and nurse perceptions of alternatives to forced medication; and whether patients, according to patients and nurses, retrospectively approved of forced medication. Eleven patients and nurses were interviewed about a certain situation of forced medication. Data were analysed by content analysis. The findings demonstrate that forced medication evokes a number of patient experiences according to patients and nurses. These are related to the disease, the situation of being forcibly medicated and the drug. Patients mentioned several alternatives to the forced medication, whereas nurses mentioned no alternatives. A minority of the patients, and not as many patients as the nurses' thought, retrospectively approved of the use of forced medication. It can be concluded that patients and nurses do not share the same perceptions about what patients experience when forcibly medicated.

Patients' satisfaction ratings and their desire for care improvement across oncology settings from France, Italy, Poland and Sweden.

There has been an increasing interest in patient satisfaction assessment across nations recently. This paper reports on a cross-cultural comparison of the comprehensive assessment of satisfaction with care (CASC) response scales. We investigated what proportion of patients wanted care improvement for the same level of satisfaction across samples from oncology settings in France, Italy, Poland and Sweden, and whether age, gender, education level and type of items affected the relationships found. The CASC addresses patient's satisfaction with the care received in oncology hospitals. Patients are invited to rate aspects of care and to mention for each of these aspects, whether they would want improvement.One hundred and forty, 395, 186 and 133 consecutive patients were approached in oncology settings from France, Italy, Poland and Sweden, respectively. Across country settings, an increasing percentage of patients wanted care improvement for decreasing levels of satisfaction. However, in France a higher percentage of patients wanted care improvement for high-satisfaction ratings whereas in Poland a lower percentage of patients wanted care improvement for low-satisfaction ratings. Age and education level had a similar effect across countries. Confronting levels of satisfaction with desire for care improvement appeared useful in comprehending the meaning of response choice labels for the CASC across oncology settings from different linguistic and cultural background. Linguistic or socio-cultural differences were suggested for explaining discrepancies between countries.

'Satisfaction with care': associations with health-related quality of life and psychosocial function among Swedish patients with endocrine gastrointestinal tumours.

The aims of this study were to investigate 'satisfaction with care' and its possible relationships to hope, health-related quality of life, anxiety and depression. Eighty-five patients with endocrine gastrointestinal (GI) tumours responded to questionnaires a few days after a hospital visit. 'Satisfaction with care' was assessed by the Comprehensive Assessment of Satisfaction with Care (CASC), health-related quality of life by the EORTC QLQ C-30 and anxiety and depression by the Hospital Anxiety and Depression Scale (HADS). Patients' highest satisfaction scores were obtained for 'general satisfaction' and 'nurses' and doctors' technical skills'. The lowest satisfaction was expressed for 'doctors' interpersonal skills', 'nurses' communication skills' and 'care organization'. Patients reporting a clinically relevant level of anxiety were less satisfied with several care aspects than those reporting less anxiety. Satisfaction with 'nurses' communication skills' and 'doctors' interpersonal skills' was associated with several aspects of health-related quality of life, whereas satisfaction with 'doctors' information', 'nurses' technical skills' and 'general satisfaction' was not. Satisfaction with psychosocial aspects of care is related to the psychosocial function of patients with endocrine GI tumours.

A comprehensive assessment of satisfaction with care: preliminary psychometric analysis in French, Polish, Swedish and Italian oncology patients.

Satisfaction with care may be closely related to quality of life in cancer patients. This evaluation is especially relevant when quality of care is considered. The present study assessed whether equivalent scaling properties could be found in a comprehensive assessment of satisfaction with care (CASC) administered in cancer patients from French, Polish and Swedish oncology settings, in comparison to the scaling properties previously evidenced in the CASC with an Italian sample. A total of 140, 186 and 133 oncology patients were approached in France, Poland and Sweden, respectively. Specific items in the CASC were identified as consistently omitted across country samples. Multitrait scaling analysis on an item-grouping adapted for the French, Polish, Swedish and Italian samples provided excellent internal consistencies and convergent validity estimates. Discriminant validity proved less satisfactory, evidencing overlap between hypothesised care dimensions across country samples. The identification of omitted or overlapping items will lead to the design of a revised CASC version to further test in larger cross-cultural samples.

Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer. Parent and nurse perceptions.

Important aspects of care and assistance for parents of children (0-18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: 'What caring aspects are important for you/the parent to feel cared for?' and 'What help, if any, do you/the parent need outside the hospital?' Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.