1.
2.
Kreicbergs, Ulrika, et al.
(författare)
Talking about death with children who have severe malignant disease.
2004
Ingår i: New England Journal of Medicine. - 0028-4793 .- 1533-4406. ; 351:12, s. 1175-1186
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child.METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child.RESULTS: None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it.CONCLUSIONS: Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.
3.
Onelöv, Erik, et al.
(författare)
Measuring anxiety and depression in the oncology setting using visual-digital scales.
2007
Ingår i: Acta oncologica (Stockholm, Sweden). - : Informa UK Limited. - 0284-186X .- 1651-226X. ; 46:6, s. 810-6
Tidskriftsartikel (refereegranskat) abstract
We investigated the feasibility of using single-item visual-digital scales for measuring anxiety and depression for research purposes within the oncology and palliative care setting. Data were retrieved from five nationwide postal questionnaires comprising 3030 individuals (response rate 76%): cancer patients, widows/parents who had lost their husband/child to cancer and population controls. All questionnaires contained the Center for Epidemiological Studies Depression scale (CES-D) and Spielberger's State-Trait Anxiety Inventory (STAI-T) as well as seven-point Visual-Digital Scales (VDS) assessing anxiety and depression. Each stepwise increased score on the VDS-depression provided a statistically significant increase in the mean score on CES-D (Spearman's r=0.582). The VDS-anxiety correlated with mean scores on STAI-T (Spearman's r=0.493), however, not all stepwise increased scores on the VDS-anxiety gave a statistically significant increase on the STAI-T. Positive- and negative predictive values were 51% and 91% for VDS-depression and 64% and 80% for VDS-anxiety. Missing data for STAI-T were 7% and 9% for CES-D; the corresponding figures were 2% for the VDS-depression and 3% for VDS-anxiety. With low attrition and agreement with psychometric scales, the Visual-Digital Scales are a feasible alternative for research in the oncology setting. However, the high negative predictive value and the low positive predictive value suggest that the visual- digital scales mainly detect the absence of the symptoms.
4.
Thulin, Helena, et al.
(författare)
Defecation disturbances after cystectomy for urinary bladder cancer
2011
Ingår i: BJU International. - : Blackwell Publishing Ltd. - 1464-4096 .- 1464-410X. ; 108:2, s. 196-203
Tidskriftsartikel (refereegranskat) abstract
What’s known on the subject? and What does the study add?Functional gastrointestinal symptoms and problems are common after radical cystectomy with urinary diversion. This study adds new important epidemiological data on this group of symptoms. OBJECTIVE: To describe and compare long-term defecation disturbances in patients who had undergone a cystectomy due to urinary bladder cancer with non-continent urostomies, continent reservoirs and orthotopic neobladder urinary diversions. PATIENTS AND METHODS: During their follow-up we attempted to contact all men and women aged 30–80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified defecation disturbances as a distressful symptom and included this item in a study-specific questionnaire together with free-hand comments. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results are presented as relative risks with 95% confidence interval. RESULTS: The questionnaire was returned from 452 (92%) of 491 identified patients. Up to 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). A sense of decreased straining capacity was reported by 20% of the men and women with non-continent urostomy and 14% and 8% of those with continent reservoirs and orthotopic neobladders, respectively. CONCLUSIONS: Of the cystectomized individuals 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). Those wanting to improve the situation for bladder cancer survivors may consider communicating before surgery the possibility of stool-emptying problems, and asking about them after surgery.
5.
Thulin, Helena, et al.
(författare)
Hygiene and urinary tract infections after cystectomy in 452 Swedish survivors of bladder cancer.
2009
Ingår i: BJU International. - 1464-4096 .- 1464-410X.
Tidskriftsartikel (refereegranskat) abstract
OBJECTIVES To determine whether or not an improved hygiene can lessen the incidence of symptomatic urinary tract infections (UTIs) in patients treated by cystectomy for urinary bladder cancer. PATIENTS AND METHODS We attempted to contact during their follow-up all men and women aged 30-80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified hygienic measures and included them in a study-specific questionnaire. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results presented as relative risks (RR) with 95% confidence interval. RESULTS We received the questionnaire from 452 (92%) of 491 identified patients. The proportion of patients who had a symptomatic UTI in the previous year was 22% for orthotopic neobladder and cutaneous continent reservoir, and 23% for non-continent urostomy diversion. The RR for a UTI was 1.1 (0.5-2.5) for 'never washing hands' before handling with catheters or ostomy material. Patients with diabetes mellitus had a RR of 2.1 (1.4-3.2) for having a symptomatic UTI. CONCLUSIONS We could not confirm lack of hygiene measures as a cause of UTI for men and women who had a cystectomy with urinary diversion. Patients with diabetes mellitus have a greater risk of contracting a UTI.
6.
Valdimarsdóttir, Unnur, et al.
(författare)
Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study.
2007
Ingår i: The lancet oncology. - 1470-2045 .- 1474-5488. ; 8:8, s. 706-14
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: We aimed to study care-related determinants of when parents gain awareness of their child's impending death to cancer, and whether the duration of this awareness affects the parents' long-term morbidity. METHODS: Between August 2001 and October 2001, 449 of 561 (80%) parents who had lost a child due to any malignancy in Sweden between Jan 1, 1992, and Dec 31, 1997 (identified on the Swedish Causes of Death Register), answered a 365-item postal questionnaire designed to ascertain when, before the child's actual death, they had become intellectually and emotionally aware of the child's impending death (awareness time). The primary endpoints were intellectual awareness time (defined as time between intellectual realisation that a disease is fatal and the actual time of death) and emotional awareness time (defined as time between emotional realisation that a disease is fatal and the actual time of death). Parents' awareness of less than 24 h was referred to as a short awareness time. FINDINGS: 436 parents answered the question about intellectual awareness and 433 parents answered the question about emotional awareness. 112 parents (26%) reported a short intellectual awareness time and 195 parents (45%) reported a short emotional awareness time. The risk of having short intellectual awareness time was increased if parents had absence of information on their child's fatal condition (mothers relative risk [RR] 3.6 [95% CI 2.3-5.5]; fathers 2.9 [1.8-4.5]) and if curative treatment was used towards the end of life (mothers 4.1 [2.6-6.5]; fathers 2.7 [1.7-4.2]). The risk of short emotional awareness time was increased if parents had absence of information indicating the child would die (mothers 1.5 [1.1-2.0]; fathers 1.8 [1.3-2.5]) and absence of talks about death with the other parent (mothers 1.5 [1.1-2.0]; fathers 1.7 [1.2-2.2]). Compared with fathers who had longer emotional awareness time, fathers with short emotional awareness time had an increased risk of depression (adjusted RR 1.8 [1.0-3.3]) and absence from employment due to sick leave or early retirement (RR 8.5 [1.1-67.8]) at follow-up. This difference was not noted for mothers. INTERPRETATION: Health-care professionals can influence parents' intellectual and emotional awareness of a child's impending death due to cancer. Short emotional awareness increases the risk of long-term depression in bereaved fathers.
