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Sjölund, Britt-MarieORCID iD iconorcid.org/0000-0002-4621-3816
Publications (10 of 13) Show all publications
Jelley, H., Kerpershoek, L., Verhey, F., Wolfs, C., De Vugt, M., Bieber, A., . . . Woods, B. (2019). Carers' experiences of timely access to and use of dementia care services in eight European countries. Ageing & Society
Open this publication in new window or tab >>Carers' experiences of timely access to and use of dementia care services in eight European countries
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2019 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779Article in journal (Refereed) In press
Abstract [en]

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

Place, publisher, year, edition, pages
Cambridge University Press, 2019
Keywords
carers, dementia, Europe, formal care, service access
National Category
Health Sciences
Identifiers
urn:nbn:se:hig:diva-30766 (URN)10.1017/S0144686X19001119 (DOI)2-s2.0-85072392166 (Scopus ID)
Available from: 2019-10-10 Created: 2019-10-10 Last updated: 2019-10-11Bibliographically approved
Kerpershoek, L., Wolfs, C., Verhey, F., Jelley, H., Woods, B., Bieber, A., . . . Vugt, M. (2019). Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study. Health & Social Care in the Community, 27(5), e814-e823
Open this publication in new window or tab >>Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study
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2019 (English)In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 27, no 5, p. e814-e823Article in journal (Refereed) Published
Abstract [en]

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
Keywords
access to care; dementia; in-depth interviews; informal care; service use
National Category
Other Medical Sciences
Identifiers
urn:nbn:se:hig:diva-30560 (URN)10.1111/hsc.12804 (DOI)000477388200001 ()31293018 (PubMedID)2-s2.0-85070981041 (Scopus ID)
Projects
Neurodegenerative Disease Research (JPND) project
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Note

The project is supported through thefollowing funding organizations underthe aegis of JPND – www.jpnd.eu [grant no. 733051001].

Germany, Ministry of Education and Research GrantIreland, Health research board Grant Italy, Ministry of Health GrantThe Netherlands, The Netherlands organization for Health Research and DevelopmentNorway, The Research Council of NorwayPortugal, Foundation for Science and Technology (Fundacao para a Ciencia e Tecnologia Grant no. FCT-JPND-HC/0001/2012 United Kingdom, Economic and Social Research Council 

Available from: 2019-08-23 Created: 2019-08-23 Last updated: 2019-10-11Bibliographically approved
Marques, M. J., Woods, B., Hopper, L., Jelley, H., Irving, K., Kerpershoek, L., . . . Gonçalves-Pereira, M. (2019). Relationship quality and sense of coherence in dementia: results of a European cohort study. International Journal of Geriatric Psychiatry, 34(5), 745-755
Open this publication in new window or tab >>Relationship quality and sense of coherence in dementia: results of a European cohort study
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2019 (English)In: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 34, no 5, p. 745-755Article in journal (Refereed) Published
Abstract [en]

Objective: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives.

Methods: Cross-sectional data from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC).

Results: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and with discrepancies was carer stress (negative feelings sub-score). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two.

Conclusions: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
Keywords
Alzheimer's disease, dementia, dyadic perspective, family care, relationship quality, sense of coherence
National Category
Nursing Geriatrics
Identifiers
urn:nbn:se:hig:diva-29376 (URN)10.1002/gps.5082 (DOI)000465019800013 ()30729572 (PubMedID)2-s2.0-85062789270 (Scopus ID)
Available from: 2019-03-12 Created: 2019-03-12 Last updated: 2019-10-11Bibliographically approved
Bieber, A., Stephan, A., Verbeek, H., Verhey, F., Kerpershoek, L., Wolfs, C., . . . Meyer, G. (2018). Access to community care for people with dementia and their informal carers: Case vignettes for a European comparison ofstructures and common pathways to formalcare [Zugang zu professioneller Unterstützung für Menschen mit Demenz und ihre Angehörigen: Fallvignetten für den europäischen Vergleich von Strukturen und Zugangswegen zu professioneller Pflege]. Zeitschrift für Gerontologie und Geriatrie (Print), 51(5), 530-536
Open this publication in new window or tab >>Access to community care for people with dementia and their informal carers: Case vignettes for a European comparison ofstructures and common pathways to formalcare [Zugang zu professioneller Unterstützung für Menschen mit Demenz und ihre Angehörigen: Fallvignetten für den europäischen Vergleich von Strukturen und Zugangswegen zu professioneller Pflege]
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2018 (English)In: Zeitschrift für Gerontologie und Geriatrie (Print), ISSN 0948-6704, E-ISSN 1435-1269, Vol. 51, no 5, p. 530-536Article in journal (Refereed) Published
Abstract [en]

Background

People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.

Objectives

Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.

Materials and methods

The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.

Results

A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.

Conclusion

Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

Keywords
Dementia, Health services accessibility, Care, Comparative study, Europe
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:hig:diva-24651 (URN)10.1007/s00391-017-1266-7 (DOI)000437252800007 ()28616816 (PubMedID)2-s2.0-85020741314 (Scopus ID)
Available from: 2017-07-03 Created: 2017-07-03 Last updated: 2019-10-11Bibliographically approved
Stephan, A., Bieber, A., Hopper, L., Joyce, R., Irving, K., Zanetti, O., . . . Meyer, G. (2018). Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics, 18(1), Article ID 131.
Open this publication in new window or tab >>Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
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2018 (English)In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 18, no 1, article id 131Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.

METHOD: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.

RESULTS: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.

CONCLUSION: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Place, publisher, year, edition, pages
BioMed Central, 2018
Keywords
Dementia, Focus groups, Formal care, Informal carer, Person with dementia, Utilisation
National Category
Nursing
Identifiers
urn:nbn:se:hig:diva-26942 (URN)10.1186/s12877-018-0816-1 (DOI)000434336700001 ()29866102 (PubMedID)2-s2.0-85047981002 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2018-06-12 Created: 2018-06-12 Last updated: 2019-10-11Bibliographically approved
Tuvesson, H., Hellström, A., Sjöberg, L., Sjölund, B.-M., Nordell, E. & Fagerström, C. (2018). Life weariness and suicidal thoughts in late life: a national study in Sweden. Aging & Mental Health, 22(10), 1365-137
Open this publication in new window or tab >>Life weariness and suicidal thoughts in late life: a national study in Sweden
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2018 (English)In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 22, no 10, p. 1365-137Article in journal (Refereed) Published
Abstract [en]

Objectives: This study aimed at investigating the point prevalence of life weariness and suicidal thoughts and their relationship with socio-demographic characteristics in a population of older adults in Sweden. Method: Data from 7913 individuals aged 60 years and older were drawn from the Swedish National Study on Aging and Care, a collaborative study in Sweden. Life weariness and suicidal thoughts were measured by one item derived from the Montgomery–Åsberg Depression Rating Scale. A multinomial regression model was used to investigate the relationships of socio-demographic characteristics with life weariness and suicidal thoughts. Results: Living in urban and semi-urban areas, being of advanced age, being divorced and having lower educational levels were related to life weariness. Living in a residential care facility, being widowed or unmarried, being born in a non-Nordic European country and experiencing financial difficulties were related to both life weariness and suicidal thoughts. Sex was found to be unrelated to either life weariness or suicidal thoughts. Conclusion: This study found that several socio-demographic variables were associated with life weariness and suicidal thoughts among older adults. Specific attention to older individuals with these characteristics may be warranted as they might be more vulnerable to life weariness and suicidal thoughts.

Keywords
life weariness, National study, older adults, socio-demographics, suicidal thoughts
National Category
Nursing
Identifiers
urn:nbn:se:hig:diva-24867 (URN)10.1080/13607863.2017.1348484 (DOI)000455491500017 ()28685600 (PubMedID)2-s2.0-85021985390 (Scopus ID)
Available from: 2017-08-17 Created: 2017-08-17 Last updated: 2019-10-11Bibliographically approved
Sjölund, B.-M., Mamhidir, A.-G. & Engström, M. (2017). Pain prevalence among residents living in nursing homes and factors associated with quality of life and well-being.
Open this publication in new window or tab >>Pain prevalence among residents living in nursing homes and factors associated with quality of life and well-being
2017 (English)In: Article in journal (Other academic) Submitted
National Category
Nursing
Identifiers
urn:nbn:se:hig:diva-25928 (URN)
Projects
Smärta hos äldre med eller utan kognitiv nedsättning - en interventionsstudie där äldres och vårdares perspektiv efterfrågas
Available from: 2018-01-04 Created: 2018-01-04 Last updated: 2019-10-11Bibliographically approved
Broda, A., Bieber, A., Meyer, G., Hopper, L., Joyce, R., Irving, K., . . . Stephan, A. (2017). Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries. BMC Health Services Research, 17(1), Article ID 518.
Open this publication in new window or tab >>Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries
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2017 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, no 1, article id 518Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers.

METHODS: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries.

RESULTS: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness.

CONCLUSIONS: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.

Keywords
Access to formal dementia care, Dementia, Expert interviews
National Category
Nursing
Identifiers
urn:nbn:se:hig:diva-24878 (URN)10.1186/s12913-017-2456-0 (DOI)000407074700002 ()28774307 (PubMedID)2-s2.0-85026838647 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2017-08-18 Created: 2017-08-18 Last updated: 2019-10-11Bibliographically approved
Mamhidir, A.-G., Sjölund, B.-M., Fläckman, B., Wimo, A., Sköldunger, A. & Engström, M. (2017). Systematic pain assessment in nursing homes: a cluster-randomized trial using mixed-methods approach. BMC Geriatrics, 17, Article ID 61.
Open this publication in new window or tab >>Systematic pain assessment in nursing homes: a cluster-randomized trial using mixed-methods approach
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2017 (English)In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 17, article id 61Article in journal (Refereed) Published
Abstract [en]

Background

Chronic pain affects nursing home residents’ daily life. Pain assessment is central to adequate pain management. The overall aim was to investigate effects of a pain management intervention on nursing homes residents and to describe staffs’ experiences of the intervention.

Methods

A cluster-randomized trial and a mixed-methods approach. Randomized nursing home assignment to intervention or comparison group. The intervention group after theoretical and practical training sessions, performed systematic pain assessments using predominately observational scales with external and internal facilitators supporting the implementation. No measures were taken in the comparison group; pain management continued as before, but after the study corresponding training was provided. Resident data were collected baseline and at two follow-ups using validated scales and record reviews. Nurse group interviews were carried out twice. Primary outcome measures were wellbeing and proxy-measured pain. Secondary outcome measures were ADL-dependency and pain documentation.

Results

Using both non-parametric statistics on residential level and generalized estimating equation (GEE) models to take clustering effects into account, the results revealed non-significant interaction effects for the primary outcome measures, while for ADL-dependency using Katz-ADL there was a significant interaction effect. Comparison group (n = 66 residents) Katz-ADL values showed increased dependency over time, while the intervention group demonstrated no significant change over time (n = 98). In the intervention group, 13/44 residents showed decreased pain scores over the period, 14/44 had no pain score changes ≥ 30% in either direction measured with Doloplus-2. Furthermore, 17/44 residents showed increased pain scores ≥ 30% over time, indicating pain/risk for pain; 8 identified at the first assessment and 9 were new, i.e. developed pain over time. No significant changes in the use of drugs was found in any of the groups. Nursing pain related documentation was sparse. In general, nurses from the outset were positive regarding pain assessments. Persisting positive attitudes seemed strengthened by continued assessment experiences and perceptions of improved pain management.

Conclusion

The implementation of a systematic work approach to pain issues in nursing homes indicates that an increased awareness, collaboration across and shared understanding among the team members of the pain assessment results can improve pain management and lead to decreased physical deterioration or the maintenance of physical and functional abilities among NH residents. However, pain (proxy-measured) and wellbeing level did not reveal any interaction effects between the groups over time.

Trial registration

The study was registered in ISRCTN71142240 in September 2012, retrospectively registered.

Keywords
pain assessment, pain intervention, nursing homes, cluster-randomized trial, mixed-methods
National Category
Health Sciences
Identifiers
urn:nbn:se:hig:diva-23724 (URN)10.1186/s12877-017-0454-z (DOI)000397457500001 ()28241785 (PubMedID)2-s2.0-85021856753 (Scopus ID)
Projects
Smärta hos äldre med eller utan kognitiv nedsättning
Funder
The Dementia Association - The National Association for the Rights of the Demented
Note

Funding agencies:

University of Gavle, Sweden  

Swedish Alzheimer's Foundation  

Available from: 2017-03-07 Created: 2017-03-07 Last updated: 2019-10-11Bibliographically approved
Wimo, A., Sjölund, B.-M., Sköldunger, A., Qui, C., Klarin, I., Nordberg, G. & von Strauss, E. (2016). Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden. Journal of Alzheimer's Disease, 50(2), 387-396
Open this publication in new window or tab >>Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden
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2016 (English)In: Journal of Alzheimer's Disease, ISSN 1387-2877, E-ISSN 1875-8908, Vol. 50, no 2, p. 387-396Article in journal (Refereed) Published
Abstract [en]

Background: Recent studies suggest that trends in cardiovascular risk may result in a decrease in age-specific prevalence of dementia. Studies in rural areas are rare.

Objectives: To study cohort effects in dementia prevalence and survival of people with dementia in a Swedish rural area.

Methods: Participants were from the 1995-1998 Nordanstig Project (NP) (n = 303) and the 2001-2003 Swedish National study on Aging and Care in Nordanstig (SNAC-N) (n = 384). Overall 6-year dementia prevalence and mortality in NP and SNAC-N were compared for people 78 years and older. Logistic regression analyses were used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) for dementia occurrence using the NP study population as the reference group. Cox regression models were used to analyze time to death.

Results: The crude prevalence of dementia was 21.8% in NP and 17.4% in SNAC-N. When the NP cohort was used as the reference group, the age- and gender-adjusted OR of dementia was 0.71 (95% CI 0.48-1.04) in SNAC-N; the OR was 0.47 (0.24-0.90) for men and 0.88 (0.54-1.44) for women. In the extended model, the OR of dementia was significantly lower in SNAC-N than in the NP cohort as a whole (0.63; 0.39-0.99) and in men (0.34; 0.15-0.79), but not in women (0.81; 0.46-1.44). The Cox regression models indicated that the hazard ratio of dying was lower in the SNAC-N than NP population.

Conclusions: Trends toward a lower prevalence of dementia in high-income countries seem to be evident in this Swedish rural area, at least in men.

Keywords
Dementia, mortality, prevalence, rural population
National Category
Geriatrics
Identifiers
urn:nbn:se:hig:diva-20887 (URN)10.3233/JAD-150708 (DOI)000368929200006 ()26639970 (PubMedID)2-s2.0-84970917672 (Scopus ID)
Projects
Physical functioning in old age: temporal trends and geographical variation in Sweden
Funder
Forte, Swedish Research Council for Health, Working Life and WelfareSwedish Research Council
Available from: 2016-01-02 Created: 2015-12-16 Last updated: 2019-10-11Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4621-3816

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