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- Sixsmith, Judith, et al.
(author)
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Healthy Ageing and Home: the Perspectives of Very Old People in Five European Countries
- 2014
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In: Social Science and Medicine. - : Elsevier BV. - 0277-9536 .- 1873-5347. ; 106
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Journal article (peer-reviewed)abstract
- This paper reports on in-depth research, using a grounded theory approach, to examine the ways in which very old people perceive healthy ageing in the context of living alone at home within urban settings in five European countries. This qualitative study was part of a cross-national project entitled ENABLE-AGE which examined the relationship between home and healthy ageing. Interviews explored the notion of healthy ageing, the meaning and importance of home, conceptualisations of independence and autonomy and links between healthy ageing and home. Data analysis identified five ways in which older people constructed healthy ageing: home and keeping active; managing lifestyles, health and illness; balancing social life; and balancing material and financial circumstances. Older people reflected on their everyday lives at home in terms of being engaged in purposeful, meaningful action and evaluated healthy ageing in relation to the symbolic and practical affordances of the home, contextualised within constructions of their national context. The research suggests that older people perceive healthy ageing as an active achievement, created through individual, personal effort and supported through social ties despite the health, financial and social decline associated with growing older. The physicality and spatiality of home provided the context for establishing and evaluating the notion of healthy ageing, whilst the experienced relationship between home, life history and identity created a meaningful space within which healthy ageing was negotiated.
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| 4. |
- Nilsson, Maria H, et al.
(author)
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Fatigue in Parkinson's Disease: Measurement Properties of a Generic and a Condition-specific Rating Scale.
- 2013
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In: Journal of Pain and Symptom Management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 46:5, s. 737-746
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Journal article (peer-reviewed)abstract
- CONTEXT: High-quality fatigue rating scales are needed to advance the understanding of fatigue and determine the efficacy of interventions. Several fatigue scales are used in Parkinson's disease, but few have been tested using modern psychometric methodology (Rasch analysis). OBJECTIVES: To examine the measurement properties of the generic Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale and the condition-specific 16-item Parkinson Fatigue Scale (PFS-16) using Rasch analysis. METHODS: Postal survey data (n=150; 47% women; mean age 70 years) were Rasch analyzed. The PFS-16 scores were tested according to both the original polytomous and the suggested alternative dichotomized scoring methods. RESULTS: The PFS-16 showed overall Rasch model fit, whereas the FACIT-F showed signs of misfit, which probably was the result of a sleepiness-related item and mixing of positively/negatively worded items. There was no differential item functioning by disease duration but by fatigue status (greater likelihood of needing to sleep or rest during the day among people classified as nonfatigued) in the PFS-16 and FACIT-F. However, this did not impact total score-based estimated person measures. Targeting and reliability (≥0.86) were good, but the dichotomized PFS-16 showed compromised measurement precision. Polytomous and dichotomized PFS-16 and FACIT-F scores identified six, three, and four statistically distinct sample strata, respectively. CONCLUSION: We found general support for the measurement properties of both scales. However, polytomous PFS-16 scores exhibited advantages compared with dichotomous PFS-16 and FACIT-F scores. Dichotomization of item responses compromises measurement precision and the ability to separate people, and should be avoided.
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- Peny-Dahlstrand, Marie, 1953, et al.
(author)
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Patterns of participation in school-related activities and settings in children with spina bifida
- 2013
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 35:21, s. 1821-1827
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Journal article (peer-reviewed)abstract
- Purpose: To evaluate how children with spina bifida (SB) participate in school-related activities and to explore if their motor and process skills in task performance were related to their level of active participation in school. Method: Fifty children from a geographical cohort of children with SB (aged 6-14 years) and their teachers rated the children's frequency of participation in school-related activities using a Swedish adaptation of the Availability and Participation Scale. The teachers also rated each child's level of active participation with the School Function Assessment, part one. Each child's motor and process skills were evaluated with the Assessment of Motor and Process Skills. The relation between levels of active participation and motor and process skills was subjected to binary logistic regression analysis. Results: The children participated very frequently in school activities, but their level of active participation was restricted, particularly in the recess/playground setting. There was a highly significant relation between full active participation in most school settings and the children's motor and process skills. Conclusion: Children with SB need support to become more actively involved, particularly in unstructured peer activities. The school staff need to be informed that not only the motor skills but also the process skills have an impact on the children's active participation.
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| 8. |
- Religa, D., et al.
(author)
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SveDem, the Swedish Dementia Registry - A tool for improving the quality of diagnostics, treatment and care of dementia patients in clinical practice
- 2015
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In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 10:2
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Journal article (peer-reviewed)abstract
- Background: The Swedish Dementia Registry (SveDem) was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden. Methods: SveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support (www.svedem.se). The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes. Results: The database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007-2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden. Conclusion: SveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.
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- Smedback, Jonas, et al.
(author)
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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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In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:4, s. 417-424
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Journal article (peer-reviewed)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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