Susanne Iwarsson

Lund University | LU · Department of Health Sciences

The ongoing digitalisation of societies, exacerbated by the COVID-19 pandemic, has led to increased efforts to ensure the digital inclusion of older adults. Digital inclusion strategies throughout the COVID-19 pandemic predominantly focused on increasing access and basic digital literacy of Information and Communication Technologies (ICTs) for all...

Background: The complex nature of late-stage Parkinson's requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods...

To achieve the widespread policy goal of active aging, it is central that older adults can participate and be independent in activities both in and outside the home. Life-space mobility refers to the extent of the area where a person performs different activities, including frequency and level of independence, and is considered an indicator of acti...

Objective The aim is to describe and reflect upon potentially pandemic-related impact on self-assessments of active ageing. As part of the baseline data collection in the Prospective RELOC-AGE (ClinicalTrials.gov NCT04765696) study, telephone interviews, including the University of Jyvaskyla Active Aging Scale (UJACAS) were conducted with 820 peopl...

Objective The objective of this paper is to describe the initial phase of a long-term collaboration initiative between a municipality and the Faculty of Medicine at a university in Sweden. The overall ambition of the collaboration is to strengthen the quality of care for older people. The concrete goal is to equip academically trained registered he...

As people age the home environment becomes increasingly important. Retirement commonly leads to spending more time in one’s home, and relocating from your own home in older age could be associated with reduced health or wellbeing. The relationship between home and person is complex and perceived aspects of one’s housing such as social, emotional an...

This is the protocol for a Campbell systematic review. The objectives are as follows: to assess the efficacy of interventions aiming to improve outdoor mobility for people with disability and to explore if the efficacy varies between different populations and different intervention components.

Background User involvement in research has rapidly increased and is often a precondition to obtain research funding. Benefits such as effectiveness and increased relevance of research are described in the literature, but the evidence to support this is weak. Little is known about ageing and health researchers’ experiences and perspectives towards...

Based on a commission by one of the Swedish Research Council, which has high ambitions to strengthen the collaboration between academia and society, this study aimed to reveal how researchers describe the collaboration with partners outside the university in research proposals. Globally, collaboration is advocated to bridge research-practice gaps a...

Background The Parkinson Disease (PD) Home Diary (HD) is a commonly used clinical outcome measure, but it has not been extensively compared to direct assessments by experienced observers.Objective Validation of patient-reported HD by investigating the agreement between motor state assessments by patients and observers.Methods This observational stu...

Background: While the importance of involving older people in research is increasingly acknowledged, quantitative studies exploring the perspectives of larger samples of older people who take an active role in research on ageing and health are scarce. The aim of this study was to investigate the awareness of and attitudes towards public involvemen...

Objective The objective of this paper is to describe the initial phase of a long-term collaboration initiative between a municipality and the medical faculty at a university in Sweden. The overall ambition of the collaboration is to strengthen the quality of care for older people. The concrete goal is to equip academically trained registered health...

Research is needed to understand attitudes and adoption of the broad range of technologies currently available to support active and healthy ageing, in different generations. Previous and current research tends to neglect the diversity of products and services, as well as typically focuses on current older people rather than those representing futu...

Background and aims: There is evidence that housing issues are associated with health outcomes as people age, but little is known in this respect regarding the specific population of people with Parkinson's disease (PD). The objective of this literature review was to identify and analyze the knowledge gap concerning people with PD and housing issu...

Background To pursue high quality research, successful participant recruitment is essential, but recruitment rates are often low. This is specifically true in target populations with impairments, for instance, among stroke survivors. Previous studies focusing on recruitment have mainly relied on information from professionals, and there is therefor...

Falls are a major public health problem among older people. Even if the outcome of a fall is not fatal, it may be a traumatic experience with both physical and psychological consequences. However, there is a lack of studies examining how falls in the home may impact the perception of the home. To compare perceptions of the home between those who ha...

Background Although housing accessibility is associated with important health outcomes in other populations, few studies have addressed this in a Parkinson’s disease population. Aim To determine the most severe environmental barriers in terms of housing accessibility problems and how these evolved over 3 years among people with Parkinson’s disease...

Plain English summary Around 1.3 million adults in Sweden give help, support and care to an ill, aged or disabled family member, neighbour or friend. As informal carers contribute a lot to our societies, it is important to recognise them and, where possible, to involve them in research that affects them, together with patients and professionals. Th...

Background: While housing and neighborhood features have the potential to impact opportunities for active aging, there is a lack of knowledge related to how older people reason regarding their housing situation and how housing and fulfillment of relocation are associated with active and healthy aging. Objective: The objectives of Prospective REL...

BACKGROUND Background: While housing and neighbourhood features have the potential to impact opportunities for active ageing, there is a lack of knowledge related to how older people reason regarding their housing situation and how housing and fulfilment of relocation are associated with active and healthy ageing. OBJECTIVE Objective: The objectiv...

This study examined equity in physical activity (PA) by investigating whether perceived opportunity for PA was associated with willingness to be more active. Among community residents (75, 80, or 85 years old, n = 962) perceived opportunity for PA (poor and good), willingness to be more active (not at all, a bit, and a lot), and level of PA (low, m...

Orientation towards application, transdisciplinarity and social distribution are prominent ideas when policy prescribes how to conduct research on complex, real-world issues. Issues dealt with in ageing research are both epistemologically complex and politically contentious. By using the metaphor of ‘travelling ideas,' we have followed these ideas...

While a broad spectrum of technologies is integrated in everyday life and routines, most research on ageing, health and technology has focused on attitudes toward and adoption of digital technologies including e-health, or home based monitoring systems. The aim of this study was to explore differences and similarities in attitudes and experiences w...

Den åldrande befolkningen har identifierats som en samhällsutmaning. En tydlig utveckling inom forskning om sådana utmaningar är krav på medverkan från patientgrupper, brukarorganisationer och andra aktörer utanför akademin. Syftet med artikeln är att introducera en modell för utformning och värdering av samverkan mellan akademiska forskare och akt...

Purpose To further understand social and leisure (SL) participation after stroke and how it can be supported in a long-term perspective, this study aims to deepen the understanding of strategies used by long-term stroke survivors in relation to SL activities. Materials and methods The study has a qualitative design, using a grounded theory approac...

In the late stage of Parkinson’s disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients’ and their informal caregivers’ satisfaction with care and support, in order to b...

While accessible housing is known as important to promote healthy ageing, the societal issue of providing accessible housing for the ageing population bears the characteristics of a “wicked problem”. The aim of this study was to gain a better understanding of crucial variables for decision-making about the provision of accessible housing for the ag...

Introduction Adults with spinal cord injuries are living longer than previously, and a majority are living in ordinary housing in the community. Housing accessibility is important for maintaining independent occupational performance for this population, but knowledge in this area is insufficient. We investigated housing adaptations and current acce...

Housing is the main spatial context for aging, important for well-being, a sense of identity and independence in daily life. Yet, as people grow older housing needs change and knowledge about how people reason about their future home when they enter retirement age is lacking. This qualitative study presents findings that explored meaning of home an...

Scientifically validated tools to assess housing accessibility for older adults in Japan have been lacking. To address this, a rigorous procedure of adapting an existing housing assessment tool—the Housing Enabler, developed in Sweden—for valid use in Japan was conducted. The original tool was translated into the Japanese language, using establishe...

Citizen science is gaining momentum as an approach in many scientific fields. However, it is scarcely used in aging research. Since 2009 in Sweden, Public & Science (NGO) has coordinated an annual mass-experiment where thousands of school pupils have collected data that would have been impossible for researchers to collect on their own. Designed as...

New technologies are being touted as solutions to many societal challenges not least of which are ageing and health. However, the rapid development of new technologies is proceeding with little input from older adults. This presentation highlights the perceptions and attitudes of three age cohorts related to the continuous technological advancement...

Background Research addressing perceptions of housing in people with Parkinson's disease (PD) is rare, and existing instruments capturing perceived aspects of housing are rarely used. Perceived housing comprises of several domains and is associated with health in general older populations. One such domain is meaning of home, captured by the Meaning...

Background Housing-related control beliefs are associated with aspects of health among older people in general. Research on Parkinson’s disease (PD) focusing on perceptions of the home are rare and instruments capturing perceived aspects of home have seldom been used. Aims To evaluate psychometric properties of the external Housing-related Control...

Background: Rehabilitation pathways are crucial to reduce stroke-related disability. Motivational Interviewing (MI), as a person-centered complex intervention, aimed to empower and motivate, and could be a resource to improve rehabilitation outcomes for older stroke survivors. The IMAGINE project aims to assess the impact of MI, as a complement to...

There is some evidence that housing accessibility, external housing-related control beliefs (HCB) and activities of daily living (ADL) are associated in complex ways; however, these pathways have not been explored in younger old. The aim was to assess the role of external HCB in the relationship between housing accessibility and ADL by applying mod...

Introduction: People with Parkinson's disease (PD) have lower life satisfaction (LS) than healthy peers. No study has yet identified predictors of LS in people with PD. Such information would be valuable for health care and future interventions that aim to maintain or increase LS. Aim: To examine how LS evolved in people with PD over a 3-year pe...

Background: External housing-related control beliefs (HCB) and general self-efficacy (GSE) influence different health outcomes in the general ageing population, but there is no information of their role in people ageing with Parkinson's disease (PD). This study aimed to longitudinally assess the role of external HCB and GSE on the association betw...

A large proportion of the Swedish housing stock was built when policymakers and housing industry rarely considered housing accessibility issues. More than 80% of Swedish citizens aged 65+ live in dwellings built before 1980. Using detailed research data from onsite observations, we explored housing accessibility issues for people with different com...

BACKGROUND There is a growing body of literature exploring the benefits and challenges of user involvement in research, though scarcely in the field of ageing and health. Moreover, the majority of such research is qualitative, which limits the generalizability of results. While user involvement is a requirement of most research funders, there is st...

Background User involvement is a requirement of most research funders. There is a growing body of literature exploring the benefits and challenges of user involvement in research, but such studies are scarce in the field of aging and health. Moreover, the majority of such research is qualitative, which limits the generalizability of results. The Us...

Aim To explore experiences of health services and unmet care needs by people with late-stage Parkinson’s in England. Method Ten participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis. Findings Participants reported that whilst under the trea...

User involvement in research is advocated as an avenue for efficient societal developments. In this article, we identify potentials, problems, and challenges related to research on aging and health, and identify and illustrate research priorities using an evolving research program as an example. Involving user representatives in the development pha...

Objectives External housing-related control beliefs (HCB) and general self-efficacy (GSE) influence different health outcomes in the general ageing population, but there is no information of their role in people ageing with Parkinson’s disease (PD). This study aimed to longitudinally assess the role of external HCB and GSE on the association betwee...

Background External housing-related control beliefs (HCB) and general self-efficacy (GSE) influence different health outcomes in the general ageing population, but there is no information of their role in people ageing with Parkinson’s disease (PD). This study aimed to longitudinally assess the role of external HCB and GSE on the association betwee...

Research has shown that positive evaluations of home are important for very old people’s health, well-being and independence in daily life. The rationale for the present study derives from our survey study findings, confirming such associations also in a younger cohort (N = 371). The purpose of this study was to further increase the understanding o...

Sweden and Japan are developed welfare countries facing serious societal and public health challenges due to demographic ageing. The objective of the present study was to provide a background to environmental challenges in the home, related to demographic ageing. Specific aims were to compare: 1) demography and household composition 2) physical hou...

In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal care...

Recurrent use of the Housing Enabler instrument has highlighted methodological challenges of broader scientific interest, namely interactions between personal functional capacity (P) and exposures to features (here potential barriers) in the built housing environment (E). This study aimed to propose and illustrate an analytic approach, separating P...

Background: Participation in everyday life and society is generally seen as essential for health-related outcomes and acknowledged to affect older people's well-being. Aims: To investigate if aspects of performance- and togetherness-related participation influence on mortality among very old single living people in Sweden. Methods: ENABLE-AGE...

The aim of this study was to explore the usefulness of research circle methodology in the later stages of the research process. In an active collaboration with the researchers, participants, that is, users of research, discussed and prioritized research on home and health dynamics. Reflections, comments, and evaluations from both leaders and users...

The importance of understanding the prodromal phase of Parkinson’s disease (PD) by systematic recording of prediagnostic symptoms and reductions in body functions has been highlighted. The aim of this study was to investigate whether persons later diagnosed with PD exhibit increased physician-certified sickness absence 1, 2, and 5 years prior to a...

Perceived aspects of home, such as usability and the meaning of home, are important for very old people’s health. This study is a synthesis of quantitative (N=371) and qualitative (N=13) findings that explored associations between perceived aspects of home, health and well-being among younger older people. Participants were aged 67 - 70 years, and...

We assessed the role of perceived control of housing situation in the relationship between housing accessibility and activities of daily living (ADL). This was a cross-sectional study with 367 community-living participants aged 67–70 years. Regression models were used to assess moderation and mediation. In the absence of a statistically significant...

Aim To explore experiences and views about care needs and service use by people with late-stage Parkinsonism. Method Ten participants at Hoehn and Yahr stage 4 or 5 were interviewed using semi-structured open ended questions and qualitative content analysis. Findings Despite severe disability, participants expressed their desire to maintain norma...

Background: Non-motor symptoms (NMS) are common in late stage Parkinson's disease (PD), as the frequency and severity of most of these symptoms increase with advancing disease. Objective: To assess effect of dopaminergic therapy on NMS in late stage PD and to investigate relationships between dopaminergic effect on NMS and on motor function. Me...

Introduction The Housing Enabler instrument, designed to measure housing accessibility, has not been used in samples with long-standing spinal cord injury. We aimed to investigate potential threats to the reliability and validity of the instrument when used among older adults with spinal cord injury. Method Cross-sectional data from the Swedish Ag...

Background: How do researchers describe societal relevance, collaboration and dissemination in research proposals? This was the main question in a commission by Forte, a research council under the Swedish Ministry of Health and Social Affairs. Each year, Forte distributes SEK 550 million to basic as well as needs-driven research in health, working...

Objectives To describe the long‐term perspective regarding prevalence of risk factors, secondary stroke prevention, and lifestyle indices after stroke. Methods From a population‐based one‐year cohort (n = 416), we performed an observational study of 145 survivors at 16 months and 10 years after stroke (age 27‐97 years) regarding secondary preventi...

Objective: To explore conditions influencing long-term participation in social and leisure activities among people who have had a stroke. Methods: This study had a qualitative design, using a grounded theory methodology. Data collection was based on in-depth interviews performed 15 years after a first-ever stroke with 10 persons recruited from a po...

Objectives This study aimed to investigate how the use and perceived unmet need of mobility devices (MD) in people with Parkinson's disease (PD) evolve over a 3‐year period. Methods The study reports baseline assessments (n = 255) and comparisons for participants with complete data at baseline and the 3‐year follow‐up (n = 165). Structured questio...

Background To describe life-space mobility and explore associations of motor and non-motor symptoms with life-space mobility in people with Parkinson’s disease (PD). Methods 164 community-dwelling persons with PD (mean age 71.6 years, 64.6% men) received a postal survey and a subsequent home visit. Motor assessments included perceived walking diff...

Background: It is unclear to which degree Levodopa (L-dopa) remains effective also in the late stage of Parkinson's disease (PD) and to which degree motor fluctuations and dyskinesias remain a problem. Objective: To assess responsiveness of motor symptomatology to L-dopa in a group of patients with late stage PD. Moreover, to investigate the ext...

The demand for accessible housing is increasing. More people are expected to live longer and live more years with reduced functional capacity in ordinary multi-family housing. To address this, detailed knowledge of accessibility problems in the existing housing stock and systems that could contribute to efficient collaboration between housing indus...

Stroke is a major cause of disability worldwide and different types of impairments can affect the individual’s ability to manage everyday activities such as travel that is essential for participation in society. The purpose of this study was to investigate the feasibility of a new self-management intervention (BUS TRIPS) focusing on travelling by b...

Objective To evaluate a set of psychometric properties (i.e., data completeness, targeting, and external construct validity) of the Parkinson's disease Activities of Daily Living Scale (PADLS) in people with Parkinson's disease (PD). Specific attention was paid to the association between PADLS and PD severity, according to the Hoehn & Yahr (H&Y) st...

Objectives: To assess the presence of depressive symptoms among older adults with long-term spinal cord injury and investigate the association with sociodemographic and injury characteristics; and to determine how potentially modifiable factors, i.e. secondary health conditions, sense of coherence, coping strategies and leisure-time physical activ...

Fear of falling is more common and pronounced in people with Parkinson’s disease than in controls. We conducted a series of studies that used multivariable regression analyses to identify explanatory factors of fear of falling in people with Parkinson’s disease. Three independent samples were used. The first study (n=154) was a postal survey study...

Sparked by the development of a Nordic Master’s Program in Gerontology, and followed by the establishment of graduate schools integrated with national aging research centers in Sweden, a national Graduate School for Ageing and Health (SWEAH) was established. SWEAH is a partner of the International Summer School on Ageing (ISSA). Program evaluation...

Building upon the experiences of establishing a graduate school integrated in a center for research on aging (CASE) and the national graduate school for aging and health (SWEAH) in Sweden, Lund University is a founding partner of ISSA. Nurtured by collective as well as personal experiences of graduate supervision and examination internationally, tr...

The rationale for involving users in research has its origin in ideas of empowerment, with a striving to shift power in the research process from the researchers to the users. User oriented research showcases a plethora of conceptual and theoretical foundations. We will problematize the variety of terms being used, such as user-driven research, co-...

Initiated as a cross-national European research endeavour 15 years ago, we have established a mixed methods research program with the overarching purpose to increase and deepen the knowledge on how aspects of home interplay with health and disability trajectories along the process of ageing. With a comparative ambition, samples representing differe...

Addressing active and healthy aging and related challenges in welfare systems demands new solutions, but the translation of new knowledge to practice is slow. User participation in research is an underutilized way to bridge science, policy and practice, but the impact in terms of effects on, changes for or benefits to society remains to be demonstr...