| 1. |
- Berg, Linda, 1961, et al.
(författare)
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Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study
- 2014
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Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 8, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
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| 2. |
- 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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| 3. |
- Flink, Maria, et al.
(författare)
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Measuring care transitions in Sweden : validation of the care transitions measure
- 2018
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Ingår i: International Journal for Quality in Health Care. - : Oxford University Press. - 1353-4505 .- 1464-3677. ; 30:4, s. 291-297
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To translate and assess the validity and reliability of the original American Care Transitions Measure, both the 15-item and the shortened 3-item versions, in a sample of people in transition from hospital to home within Sweden.Design: Translation of survey items, evaluation of psychometric properties.Setting: Ten surgical and medical wards at five hospitals in Sweden.Participants: Patients discharged from surgical and medical wards.Main outcome measure: Psychometric properties of the Swedish versions of the 15-item (CTM-15) and the 3-item (CTM-3) Care Transition Measure.Results: We compared the fit of nine models among a sample of 194 Swedish patients. Cronbach's alpha was 0.946 for CTM-15 and 0.74 for CTM-3. The model indices for CTM-15 and CTM-3 were strongly indicative of inferior goodness-of-fit between the hypothesized one-factor model and the sample data. A multidimensional three-factor model revealed a better fit compared with CTM-15 and CTM-3 one factor models. The one-factor solution, representing 4 items (CTM-4), showed an acceptable fit of the data, and was far superior to the one-factor CTM-15 and CTM-3 and the three-factor multidimensional models. The Cronbach's alpha for CTM-4 was 0.85.Conclusions: CTM-15 with multidimensional three-factor model was a better model than both CTM-15 and CTM-3 one-factor models. CTM-4 is a valid and reliable measure of care transfer among patients in medical and surgical wards in Sweden. It seems the Swedish CTM is best represented by the short Swedish version (CTM-4) unidimensional construct.
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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. |
- Smedback, Jonas, et al.
(författare)
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Palliative care during the final week of life of older people in nursing homes : A register-based study
- 2017
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:4, s. 417-424
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes. Method: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics. Results: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place. Significance of results: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
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| 7. |
- Abellan, A., et al.
(författare)
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Partner care, gender equality, and ageing in Spain and Sweden
- 2017
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Ingår i: International Journal of Ageing and Later Life. - : Linkoping University Electronic Press. - 1652-8670. ; 11:1, s. 69-89
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Tidskriftsartikel (refereegranskat)abstract
- We used national surveys to study how older persons’ changing household patterns influence the gender balance of caregiving in two countries with distinct household structures and cultures, Spain and Sweden. In both countries, men and women provide care equally often for their partner in couple-only households. This has become the most common household type among older persons in Spain and prevails altogether in Sweden. This challenges the traditional dominance of young or middle-aged women as primary caregivers in Spain. In Sweden, many caregivers are old themselves. We focus attention to partners as caregivers and the consequences of changing household structures for caregiving, which may be on the way to gender equality in both countries, with implications for families and for the public services.
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| 8. |
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Att leva med demens
- 2016. - 1
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- För att personer med demenssjukdom ska kunna leva ett fullgott liv behövs mer kunskap. I grunden handlar det om att förändra föreställningar och attityder till personer som lever med en demenssjukdom så att personerna själva, deras anhöriga och personal inom hälso- och sjukvården och politiker, kan se nya möjligheter i stället för enbart förluster. I den här boken presenteras kunskap och forskning som sätter personer med demenssjukdom i centrum. Boken utgår alltså inte i första hand från vården eller anhöriga, utan från dem som lever med sjukdomen. På så sätt skapas en tankeram som ger stöd vid både utvecklingsarbete och reflektion bland människor som på olika sätt arbetar med och för personer med demenssjukdom.Cirka 110 000 och 170 000 svenskar har i dag en demenssjukdom. Om ett tiotal år är det betydligt fler: ökad livslängd och en större medvetenhet om demenssjukdomar gör att allt fler personer får en diagnos tidigt i förloppet. Som en konsekvens av detta kommer alltfler personer att leva med en demenssjukdom under lång tid, och ofta i hemmet. Detta innebär inte bara en utmaning för vård, omsorg och socialpolitik, utan väcker också frågor som berör såväl personer med demens, som anhöriga och andra i det sociala nätverket: Hur kan personer med demens leva och fungera i sitt hem tillsammans med eventuella familjemedlemmar? Hur kan de fungera som medborgare och delta i samhällslivet, ha makt över sitt eget vardagsliv och fatta egna beslut om sitt eget liv?I boken medverkar forskare från Centrum för demensforskning (CEDER) vid Linköpings universitet. Den innehåller många pedagogiska exempel och riktar sig till utbildningar inom vård, omvårdnad, socialt arbete och omsorg.
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| 9. |
- Ayoub, Maria, 1990-, et al.
(författare)
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The Family Talk Intervention in Pediatric Oncology : Potential Effects Reported by Parents
- 2024
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Ingår i: Children. - : MDPI. - 2227-9067. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
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| 10. |
- Bendt, Martina, et al.
(författare)
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Adults with spina bifida : A cross-sectional study of health issues and living conditions
- 2020
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Ingår i: Brain and Behavior. - : John Wiley & Sons. - 2162-3279. ; 10:8
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To describe health issues and living conditions in a cohort of adults living with Spina bifida.MATERIAL AND METHODS: A cross-sectional study was conducted by a multidisciplinary team. Adults with spina bifida (n = 219) were invited to participate. One-hundred-and-ninety-six persons (104 women and 92 men; 18-73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.RESULTS: There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals >46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.CONCLUSIONS: This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow-up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow-up services and social support throughout life.
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