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Helldén, J., Bergström, L. & Karlsson, S. (2018). Experiences of living with persisting post-stroke dysphagia and of dysphagia management – a qualitative study. International Journal of Qualitative Studies on Health and Well-being, 13(sup1), Article ID 1522194.
Open this publication in new window or tab >>Experiences of living with persisting post-stroke dysphagia and of dysphagia management – a qualitative study
2018 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 13, no sup1, article id 1522194Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this study was to investigate people’s experiences of living with dysphagia after stroke, and their experiences of dysphagia management.

Methods: The study design was qualitative, and an open-ended approach to data collection was used, with follow-up probing questions to gain more information as needed. Personal interviews were conducted with five persons who had persisting moderate to severe dysphagia after stroke, living in the south-west part of Sweden. The data were analysed with qualitative content analysis.

Results: When analysing the data, the following theme emerged; “Dysphagia impacts life situations negatively and requires individually adapted, long term support from skilled health care professionals”. The theme consists of three categories: “Learning to manage dysphagia and its complications”, “Professional support with dysphagia varies” and “Finding small moments of joy despite large restrictions in life situations”.

Conclusions: Findings indicated that people with dysphagia experienced a lack of support from health care professionals. Better health care support following discharge from hospital is required to ensure an optimal quality of life. Actions to achieve this may include developing national guidelines for adequate dysphagia follow-up and establishing multidisciplinary dysphagia teams in hospitals and long-term care facilities.

Place, publisher, year, edition, pages
Abingdon: Taylor & Francis, 2018
Keywords
Swallowing difficulties, speech–language pathology, life situations, patient reported outcome, qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-38080 (URN)10.1080/17482631.2018.1522194 (DOI)30257150 (PubMedID)
Note

Partial funding was received by the second author (Liza Bergström), from the Research and Development Department, Västra Götaland Regional Council.

Available from: 2018-09-30 Created: 2018-09-30 Last updated: 2018-10-01Bibliographically approved
Karlsson, S., Arvidsson, S., Cuesta, M., Millberg German, L. & Nilsson, C. (2018). HICube Kompetenta vården, Delrapport: Välfärdsteknik ur ett etiskt perspektiv, Varbergs kommun.
Open this publication in new window or tab >>HICube Kompetenta vården, Delrapport: Välfärdsteknik ur ett etiskt perspektiv, Varbergs kommun
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2018 (Swedish)Report (Other academic)
Publisher
p. 35
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-38081 (URN)
Projects
HICube Kompetenta vården
Funder
European Social Fund (ESF)
Available from: 2018-09-30 Created: 2018-09-30 Last updated: 2018-10-02Bibliographically approved
Lethin, C., Leino-Kilpi, H., Bleijlevens, M. H., Stephan, A., Soto Martin, M., Zabalegui, A. & Karlsson, S. (2018). Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study. Dementia
Open this publication in new window or tab >>Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study
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2018 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684Article in journal (Refereed) Epub ahead of print
Abstract [en]

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers’ negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers’ negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care. © 2018, The Author(s) 2018.

Place, publisher, year, edition, pages
London: Sage Publications, 2018
Keywords
caregiver burden, care provision, dementia, home care, quality of care
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-36715 (URN)10.1177/1471301218782502 (DOI)29929383 (PubMedID)2-s2.0-85048872839 (Scopus ID)
Projects
RightTimePlaceCare
Funder
EU, FP7, Seventh Framework Programme, 242153
Available from: 2018-05-03 Created: 2018-05-03 Last updated: 2018-07-04
Bökberg, C., Ahlström, G. & Karlsson, S. (2018). Utilisation of formal and informal care and services at home among persons with dementia: a cross-sectional study. Scandinavian Journal of Caring Sciences, 32(2), 843-851
Open this publication in new window or tab >>Utilisation of formal and informal care and services at home among persons with dementia: a cross-sectional study
2018 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 2, p. 843-851Article in journal (Refereed) Published
Abstract [en]

Background

The progression of dementia disease implies increasing needs for both informal and formal care and services but also risk of institutionalisation. To better adjust care and services in the phase preceding institutionalisation it is important to find out whether utilisation of formal and informal care and services is determined by increased needs and by who meets the needs.Aim

The aim was to compare persons with dementia (65+) with different levels of cognitive impairment, regarding utilisation of formal and informal care and service at home.Methods

The participants consisted of 177 persons with dementia ≥65 years old and at risk of nursing home admission, divided into groups according to their cognitive function. Structured interviews were conducted based on questionnaires about type and amount of formal and informal care utilised, as well as questions regarding cognitive impairment, dependency in activities of daily living (ADLs) and neuropsychiatric symptoms. To analyse the data, descriptive and comparative statistics were used.Results

The findings revealed that the group with severe dementia used significantly more help with ADLs and supervision in terms of time (number of hours and days) provided by the informal caregiver, compared with the group with moderate dementia. Utilisation of formal care and services was highest in the group with the most severe cognitive impairments (Standardized Mini-Mental State Examination score of <9). The group with severe dementia were more dependent in ADLs and had more neuropsychiatric symptoms (hallucinations and motor disturbances). They were younger and more often cohabitated with the informal caregiver, compared with the group with moderate dementia.Conclusion

This study shows that in the phase preceding institutionalisation the ADL and supervision needs due to progression of dementia appear to tend to be met first and foremost by the informal caregivers. © 2017 Nordic College of Caring Science.

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell Publishing Inc., 2018
Keywords
care and services at home, dementia
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:hh:diva-34832 (URN)10.1111/scs.12515 (DOI)28869661 (PubMedID)
Projects
RightTimePlaceCare
Funder
EU, FP7, Seventh Framework Programme, 242153Swedish Research Council
Note

The study was a part of the RightTimePlaceCare project supported by a grant from the European Commission within the 7th Framework Programme (project 242153). We would like to acknowledge the support from the Gyllenstierna Krapperup's Foundation. We would also like to acknowledge the support of the Department of Health Sciences, Lund University, Lund, Sweden. This study was accomplished while Christina Bökberg was affiliated with the Swedish National Graduate School for Competitive Science on Ageing and Health (SWEAH), which is funded by the Swedish Research Council.

Available from: 2017-08-30 Created: 2017-08-30 Last updated: 2018-07-03Bibliographically approved
Forsberg, E., Bäcklund, B., Hjort-Telhede, E. & Karlsson, S. (2018). Virtual patient cases for active student participation in nursing education. Paper presented at 3rd World Congress on Nursing Education, Practice & Research, May 16-17, 2018, Montreal, Canada. Journal of Nursing & Care, 7, 63-63
Open this publication in new window or tab >>Virtual patient cases for active student participation in nursing education
2018 (English)In: Journal of Nursing & Care, ISSN 2167-1168, Vol. 7, p. 63-63Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

A didactive method which promote a more active student participation (ASP), Virtual Patient (VP) cases  may be a valuable intervention. VP cases are defined as interactive computer simulations of real-life clinical scenarios for healthcare education. VP cases are excellent for training clinical reasoning skills.

The aim of the study was to investigate utilization of VP cases for ASP in nursing education, regarding student’s learning experience.

The design was an intervention study, 58 students in the third semester of six in the nursing program were included in the study. In 2016-2017, interventions have been conducted in the Human Biomedicine course with the purpose to develop a course concept that included didactic methods that promoted ASP. The students performed four VP cases individually at home. Before solving  the VP cases, the students had lectures in medicine science for example concerning chest organs diseases. In order to be a complement to that lecture the VP case was about chronic obstructive pulmonary disease. The lectures were followed up with seminars where the students were able to ask questions regarding conducted VP cases. After each performed VP case, the student answered a self -evaluation form with open ended questions.  Data was conducted using content analysis.

The result showed that the students found the VP cases challenging and motivational. The VPs taught them to think wide and stimulated to search for more knowledge. Finally they thought it was a good way to test themselves and appreciated the direct feedback, lack of knowledge became visible at once. © 2018 OMICS International

Place, publisher, year, edition, pages
Henderson: OMICS International, 2018
Keywords
Virtual Patiens, nursing, active student participation
National Category
Learning
Identifiers
urn:nbn:se:hh:diva-37039 (URN)10.4172/2167-1168-C3-071 (DOI)
Conference
3rd World Congress on Nursing Education, Practice & Research, May 16-17, 2018, Montreal, Canada
Available from: 2018-06-13 Created: 2018-06-13 Last updated: 2018-06-14Bibliographically approved
Karlsson, S., Fagerström, C., Midlöv, P. & Hallberg, I. R. (2017). Antipsychotic medication in relation to national directives in people with dementia in Sweden. In: IAGG 2017 Abstract Book: . Paper presented at 21st IAGG World Congress of Gerontology and Geriatrics, in San Francisco, USA, July 23-27, 2017 (pp. 349-350). Washington, DC: The Gerontological Society of America
Open this publication in new window or tab >>Antipsychotic medication in relation to national directives in people with dementia in Sweden
2017 (English)In: IAGG 2017 Abstract Book, Washington, DC: The Gerontological Society of America , 2017, p. 349-350Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

The aim of this study was to explore trends in treatment with antipsychotic medication in Swedish dementia care as reported in the most recent empirical studies on the topic, and to relate these trends to directives and recommendations from national authorities.

The study included two scoping review studies and two empirical studies. The scoping studies reviewed published data in electronic databases as well as Swedish recommendations and directives in the field.

During the past decade, recommendations have been developed regarding antipsychotic medication in Sweden. These recommendations were generic at first, but have become increasingly specific and restrictive with time. The scoping review showed that treatment with antipsychotic drugs varied between 6% and 38%, and was higher in younger older persons and those with moderate cognitive impairment and living in nursing homes for people with dementia. A trend towards a decrease in antipsychotic use has been seen over the last 15 years. The empirical studies showed that the medication with antipsychotics decreased from 23.4% in 2001 to 11.5% in 2007, for older people in general as well as for older people with dementia. Among older people with dementia, 10% were utilizing antipsychotic medication, with no difference between those cared for at home and those in nursing homes.

Directives from Swedish national authorities seem to have had an impact on antipsychotic medication for people with dementia. Treatment with antipsychotic medication has decreased, while other psychotropic medication has increased. National directives may possibly be even more effective, if applied in combination with systematic follow-ups.

Place, publisher, year, edition, pages
Washington, DC: The Gerontological Society of America, 2017
Series
Innovation in aging, E-ISSN 2399-5300 ; Suppl. 1
Keywords
Dementia, Antipsychotic medication, Drug utilization, Directive
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-36007 (URN)
Conference
21st IAGG World Congress of Gerontology and Geriatrics, in San Francisco, USA, July 23-27, 2017
Available from: 2017-12-29 Created: 2017-12-29 Last updated: 2018-01-10Bibliographically approved
Karlsson, S. (2017). Promotion of health with digital learning for older persons with dementia and their cohabitee at home. In: : . Paper presented at International Summit Forum for “Social Security Frontier Issues”, Halmstad University, Sweden, October 13-14, 2017.
Open this publication in new window or tab >>Promotion of health with digital learning for older persons with dementia and their cohabitee at home
2017 (English)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-36008 (URN)
Conference
International Summit Forum for “Social Security Frontier Issues”, Halmstad University, Sweden, October 13-14, 2017
Note

Keynote speak

Available from: 2017-12-29 Created: 2017-12-29 Last updated: 2018-02-16Bibliographically approved
Lethin, C., Renom-Guiteras, A., Zwakhalen, S., Soto-Martin, M., Saks, K., Zabalegui, A., . . . Karlsson, S. (2017). Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging & Mental Health, 21(11), 1138-1146
Open this publication in new window or tab >>Psychological well-being over time among informal caregivers caring for persons with dementia living at home
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2017 (English)In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 21, no 11, p. 1138-1146Article in journal (Refereed) Published
Abstract [en]

Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.

Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.

Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being.

Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs. © 2016 Informa UK Limited, trading as Taylor & Francis Group

Place, publisher, year, edition, pages
Abingdon, Oxon: Routledge, 2017
Keywords
Dementia, caregivers, health professionals, home care services, adaptation, psychological
National Category
Nursing Nursing
Identifiers
urn:nbn:se:hh:diva-31595 (URN)10.1080/13607863.2016.1211621 (DOI)27463390 (PubMedID)2-s2.0-84979997852 (Scopus ID)
Funder
EU, FP7, Seventh Framework Programme, 242153
Available from: 2016-07-06 Created: 2016-07-06 Last updated: 2017-09-05Bibliographically approved
Lethin, C., Renom Guiteras, A., Zwakhalen, S., Soto Martin, M., Saks, K., Zabalegui, A., . . . Karlsson, S. (2017). Psychological well-being over time among informal caregivers caring for persons with dementia living at home. In: IAGG 2017 Abstract Book: . Paper presented at 21st IAGG World Congress of Gerontology and Geriatrics, in San Francisco, USA, July 23-27, 2017 (pp. 1381-1381). Washington, DC: The Gerontological Society of America, 1
Open this publication in new window or tab >>Psychological well-being over time among informal caregivers caring for persons with dementia living at home
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2017 (English)In: IAGG 2017 Abstract Book, Washington, DC: The Gerontological Society of America , 2017, Vol. 1, p. 1381-1381Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

This study investigated informal caregivers’ psychologi- cal well-being and predicted increase in psychological well- being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. This was a cohort study, at baseline and follow-up in eight European countries. Caregivers included (n=1,223) were caring for PwDs aged ≥ 65 years living at home, in risk of being institutionalized. Data was collected using standard- ized instruments. Logistic regression analysis of factors asso- ciated with caregiver psychological well-being at baseline and 3 months later was performed. Factors associated with presence of caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD and few neuropsychiatric symptoms for the PwD. At follow-up, caregivers with increased psychologi- cal well-being experienced quality of care (QoC) higher and were more often using dementia speci c service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiv- ing, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiat- ric symptoms. Higher QoC predicted increased caregivers’ psychological well-being. It can be concluded that informal caregiving for PwDs living at home is a complex task. Our study showed that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neu- ropsychiatric symptoms that might affect caregivers’ psycho- logical well-being, and provide proper care and treatment for caregivers and PwDs.

Place, publisher, year, edition, pages
Washington, DC: The Gerontological Society of America, 2017
Series
Innovation in aging, E-ISSN 2399-5300 ; Suppl. 1
Keywords
Dementia, caregivers, health professionals, home care services, adaptation, psychological
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-36006 (URN)
Conference
21st IAGG World Congress of Gerontology and Geriatrics, in San Francisco, USA, July 23-27, 2017
Available from: 2017-12-29 Created: 2017-12-29 Last updated: 2018-01-10Bibliographically approved
Bökberg, C., Ahlström, G. & Karlsson, S. (2017). Significance of quality of care for quality of life in persons with dementia at risk of nursing home admission: a cross-sectional study. BMC Nursing, 16(1), Article ID 39.
Open this publication in new window or tab >>Significance of quality of care for quality of life in persons with dementia at risk of nursing home admission: a cross-sectional study
2017 (English)In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 16, no 1, article id 39Article in journal (Refereed) Published
Abstract [en]

Background

Quality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was to 1) describe self-reported quality of life in persons with dementia at risk of nursing home admission. 2) describe subjective and objective aspects of quality of care, 3) investigate the significance of quality of care for quality of life.

Methods

A cross-sectional interview study design was used, based on questionnaires about quality of life (QoL-AD) and different aspects of quality of care (CLINT and quality indicators). The sample consisted of 177 persons with dementia living in urban and rural areas in Skåne County, Sweden. Descriptive and comparative statistics (Mann-Whitney U-test) were used to analyse the data.

Results

Based upon Lawton’s conceptual framework for QoL in older people, persons with pain showed significantly lower quality of life in the dimensions behavioural competence (p = 0.026) and psychological wellbeing (p = 0.006) compared with those without pain. Satisfaction with care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling.

Conclusion

This study indicates need for improvements in home care and services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home. © 2017 The Author(s).

Place, publisher, year, edition, pages
London: BioMed Central, 2017
Keywords
Quality of life, Quality of care, Persons with dementia, Home care
National Category
Health Sciences
Identifiers
urn:nbn:se:hh:diva-34831 (URN)10.1186/s12912-017-0230-6 (DOI)000405812500002 ()28725160 (PubMedID)2-s2.0-85023647327 (Scopus ID)
Projects
RightTimePlaceCare
Funder
EU, FP7, Seventh Framework Programme, 242153Swedish Research Council
Available from: 2017-08-30 Created: 2017-08-30 Last updated: 2018-03-23Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-6624-9963

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