| 1. |
- Eilertsen, M. E. B., et al.
(författare)
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Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
- 2013
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310
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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.
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| 2. |
- Jalmsell, Li, et al.
(författare)
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On the child's own initiative : parents communicate with their dying child about death
- 2015
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 39:2, s. 111-117
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Tidskriftsartikel (refereegranskat)abstract
- Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
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| 3. |
- Lundberg, Emma, 1984, et al.
(författare)
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Place of death among foreign-born individuals: a national population-based register study.
- 2023
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Ingår i: Palliative care and social practice. - 2632-3524. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Relatively little is known about where foreign-born individuals die in Sweden and how birth region might influence place of death. Thus, there is a need for population-based studies investigating place of death and associated factors among foreign-born individuals.The aim of this study was to identify variations in place of death among foreign-born individuals residing in Sweden and to compare place of death between the foreign- and domestic-born population. We also examine the association between place of death, underlying cause of death and sociodemographic characteristics among the foreign-born population.A population-based register study.All deceased individuals ⩾18years of age in Sweden with a registered place of death between 2012 and 2019 (n=682,697). Among these, 78,466 individuals were foreign-born. Univariable multinomial logistic regression modelling and multivariable multinomial logistic regression analyses were performed.Overall, hospital was the most common place of death among the foreign-born population. However, there were variations in place of death related to region of birth. Compared to domestic-born, a higher proportion of foreign-born individuals dies at home, the majority of whom were born on the African continent.Region of birth is one of the several factors associated with place of death among foreign-born individuals. Further research is needed to explore both preferences and barriers to place of death among foreign-born individuals.
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| 4. |
- Hanan, El Malla, et al.
(författare)
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Adherence to medication : A nation-wide study from the Children's Cancer Hospital, Egypt
- 2013
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Ingår i: World journal of psychiatry. - : Baishideng Publishing Group Inc.. - 2220-3206. ; 22, s. 62-62
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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.
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| 5. |
- Hanan, El Malla, et al.
(författare)
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Cancer disclosure-account from a pediatric oncology ward in Egypt
- 2017
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Ingår i: Psycho-Oncology. - Chichester : Wiley. - 1057-9249 .- 1099-1611. ; 26:5, s. 679-685
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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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| 6. |
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| 7. |
- Lundh Hagelin, Carina, et al.
(författare)
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Factors influencing attitude toward care of dying patients in first-year nursing students.
- 2016
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Ingår i: International journal of palliative nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 22:1, s. 28-36
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Erlandsson, Kerstin, et al.
(författare)
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Support after stillbirth and its effect on parental grief over time
- 2011
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Ingår i: Journal of Social Work in End-of-Life & Palliative Care. - : Informa UK Limited. - 1552-4256 .- 1552-4264. ; 7:2-3, s. 139-52
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Tidskriftsartikel (refereegranskat)abstract
- In this study the authors describe parents' experiences of support over a 2-year period after a stillbirth and its effect on parental grief. Data was collected by questionnaire from 33 mothers and 22 fathers at 3 months, 1 year, and 2 years after a stillbirth. Midwives, physicians, counselors, and priests--at the hospital where the stillbirth occurred--are those on the front line providing professional support. The support from family and friends was seen to be important 2 years after the stillbirth. The need for professional support after stillbirth can differ, depending on the support provided by family, friends, and social networks. They may not fully realize the value of their support and how to be supportive. Printed educational materials given to individuals in the social network or family might therefore be helpful.
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| 9. |
- Axelsson, Lena, et al.
(författare)
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Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
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Tidskriftsartikel (refereegranskat)abstract
- Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 10. |
- Holm, Maja, et al.
(författare)
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Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.
- 2019
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.
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