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Sökning: LAR1:gu > Sophiahemmet Högskola

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  • Berglund, Britta, et al. (författare)
  • Foot pain and disability in individuals with Ehlers-Danlos syndrome (EDS): impact on daily life activities.
  • 2005
  • Ingår i: Disability and rehabilitation. - 0963-8288. ; 27:4, s. 164-9
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To investigate the amount and severity of podiatric problems in individuals with EDS as well as the consequences on daily life activities, and to compare these results with the results from a comparison group of the general population. METHOD: The Manchester Foot Pain and Disability Schedule (MFPDS) and a demographic and foot-specific form were mailed. RESULTS: One hundred and thirty-six individuals with EDS and 292 from the comparison group responded. The median MFPDS total score in the EDS group was 33 (range 17-49) (mean 32, SD 8) and in the comparison group 17 (range 17-41) (mean 19, SD 4) (P < 0.001). The items most frequently marked with 3 points in the EDS group were: 'I avoid standing for a long time', 'I catch the bus or use the care more often', and 'I get irritable when my feet hurt' (56, 46 and 43%, respectively). When comparing the NRS score (i.e. Numeric Rating Scale) regarding pain intensity between the EDS group (median 5) and the comparison group (median 0), a statistically significant difference was found (P < 0.001). Other foot problems than pain were reported by 73% (n = 100) of the EDS group and by 21% (n = 60) of the comparison group (P < 0.001). The presence of flat feet in the EDS group and the comparison group was reported by 55% (n = 75) and 8% (n = 23) respectively. CONCLUSION: Individuals' with EDS endure difficulties with their mobility due to their foot problems and related disability. It is therefore of utmost importance to find ways to assess the actual foot status for this group and to support the individuals with solutions to their problems with ambulation.
  • Bylund Grenklo, Tove, et al. (författare)
  • Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths.
  • 2013
  • Ingår i: Journal of Clinical Oncology. - American Society of Clinical Oncology. - 1527-7755.
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSETo assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death. METHODSThis nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.ResultsA majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1). CONCLUSIONOur study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.
  • Bylund Grenklo, Tove, et al. (författare)
  • Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up.
  • 2013
  • Ingår i: JAMA pediatrics. - 2168-6211. ; 167:2, s. 133-40
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers.DESIGN: Population-based study of cancer-bereaved youth and a random sample of matched population controls.SETTING: Sweden in 2009 and 2010.PARTICIPANTS: A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers.MAIN EXPOSURE: Cancer bereavement or nonbreavement during the teenage years.MAIN OUTCOME MEASURES: Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000.RESULTS: Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0).CONCLUSIONS: One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.
  • Bylund Grenklo, Tove, et al. (författare)
  • Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors
  • 2014
  • Ingår i: Psycho-Oncology. - John Wiley & Sons. - 1099-1611. ; 23:9, s. 989-997
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent. Methods: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care. Results: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury. Conclusion: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children. Copyright (C) 2014 John Wiley & Sons, Ltd.
  • Dunberger, Gail, et al. (författare)
  • Cancer survivors' perception of participation in a long-term follow-up study.
  • 2013
  • Ingår i: Journal of medical ethics. - 1473-4257. ; 39:1, s. 41-5
  • Tidskriftsartikel (refereegranskat)abstract
    • Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.
  • Eilegård, Alexandra, et al. (författare)
  • Bereaved siblings' perception of participating in research : a nationwide study
  • 2013
  • Ingår i: Psycho-Oncology. - 1057-9249. ; 22:2, s. 411-416
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation. METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test. RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018). CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance. 
  • Eilegård, Alexandra, et al. (författare)
  • Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.
  • 2013
  • Ingår i: Psycho-Oncology. - 1057-9249. ; 22:3, s. 683-691
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.
  • Eilertsen, Mary-Elizabeth Bradley, et al. (författare)
  • Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
  • 2013
  • Ingår i: Journal of Pediatric Oncology Nursing. - 1043-4542. ; 30:6, s. 301-310
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
  • El Malla, Hanan, et al. (författare)
  • Adherence to medication: A nation-wide study from the Children's Cancer Hospital, Egypt
  • 2013
  • Ingår i: World Journal of Psychiatry. - 2220-3206. ; 2:22
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt.METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States).RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001).CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.
  • El Malla, Hanan, et al. (författare)
  • Cancer disclosure-account from a pediatric oncology ward in Egypt.
  • 2016
  • Ingår i: Psycho-Oncology. - 1057-9249.
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.METHODS: For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.RESULTS: Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).CONCLUSIONS: Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.
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