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  • 1.
    Bergin, Michelle
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation. Department of Occupational Science and Occupational Therapy, University College Cork, Cork, Ireland.
    Boyle, Bryan
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation. Department of Occupational Science and Occupational Therapy, University College Cork, Cork, Ireland.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Prellwitz, Maria
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Exploring with children, play in Irish primary schoolyards2024In: International Journal of Play, ISSN 2159-4937, Vol. 13, no 2, p. 157-172Article in journal (Refereed)
    Abstract [en]

    Children’s play in Irish schoolyards remains neglected in educational policies and practices despite government commitments to inclusive schools and children’s rights. There is a dearth of research on children’s perspectives of play, criticisms of ‘at risk’ discourses underpinning concerns for certain children’s play rights, and studies identifying exclusion within Irish schoolyards, particularly for children with minoritized identities. This inquiry informed by the theory of practice architectures used walking interviews to explore with twenty-three children their play practices in two Irish primary schools identified as disadvantaged. Analysis of the interviews generated three themes: (1) the state of play – cracks with(in) the routines of the schoolyard, (2) playing along and with(in) this shared space and (3) the hard yard. This inquiry contributes to understandings of children’s play with(in) Irish schoolyards, as socially situated practices with contrasting representations of play as habitual and emerging. Play was central to children’s social lives, identities, and friendships and interrelated with diverse constraints, exclusionary practices, and the (re)production of the ‘hard yard’. While mattering most children’s experiences of significant constraints and inequities, this inquiry also highlighted the transformative possibilities generated within play to create shared possibilities for individual and collective flourishing. 

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  • 2.
    Bergin, Michelle
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation. Department of occupational Science and occupational therapy, university college cork, cork, ireland.
    Boyle, Bryan
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation. Department of occupational Science and occupational therapy, university college cork, cork, ireland.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Prellwitz, Maria
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    ‘Finding the play’- exploring with occupational therapists practice possibilities in the context of Irish schoolyards2024In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 31, no 1, article id 2361649Article in journal (Refereed)
    Abstract [en]

    Background

    Research has identified diverse constraints to the adoption of school-based occupational therapy approaches and a lack of attention to addressing the barriers to children’s play opportunities. Critical contextualised research is advocated to inform practice possibilities.

    Aims/Objectives

    This inquiry aimed to explore with occupational therapists their existing practices in Irish schoolyards to generate practice possibilities concerned with play, as an issue of occupational justice.

    Materials and Methods

    Using the theory of practice architectures, six occupational therapists from diverse sites of practice participated in the first phase of a critical action research process using dialogical focus group and occupational mapping methods.

    Results

    Three themes were generated (1) Existing practices as situated (2) (Re)mattering play and practices as occupations and (3) Practice possibilities – ‘Finding the play’ between responsiveness and responsibilities. A further interrelated dimension was how the research methods provided mechanisms of raising consciousness.

    Conclusions, and Significance

    Alongside constructing knowledges on existing practices in an Irish context, this inquiry contributes to understandings of practices as socially embedded generative processes of ‘finding the play’, highlighting ethical responsibilities to make visible inequities reproduced in habitual practices and engage in relationships of solidarity to (re)construct alternative shared practices.

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  • 3.
    Bergin, Michelle
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Boyle, Bryan
    Department of Occupational Science and Occupational Therapy, University College Cork, Cork, Ireland.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Prellwitz, Maria
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Irish Schoolyards: Teacher’s Experiences of Their Practices and Children’s Play-“It’s Not as Straight Forward as We Think”2024In: Journal of Occupational Therapy, Schools, & Early Intervention, ISSN 1941-1243, E-ISSN 1941-1251, Vol. 17, no 2, p. 259-278Article in journal (Refereed)
    Abstract [en]

    With the inclusion of play as a right, schools are urged to consider whether all children can access play opportunities in schoolyards. Refocusing on play as occupation is identified as an important way in which occupational therapists can contribute within schools. Greater knowledges of children’s play and teachers’ practices, in schoolyards in an Irish context, is required however to guide practices. This inquiry used interviews to explore with 10 primary school teachers, their practices, and experiences of children’s play in Irish schoolyards. Reflexive thematic analysis was used to generate three interrelated themes. These were a) Break(in)time: Play in schoolyards as different from other ways of doing within schools, b) play as producing inclusion and exclusion, c) and certainties and uncertainties produced in teachers’ everyday practices. This inquiry generated knowledges on the social nature of children’s play and teachers” practices in Irish schoolyards as negotiated processes, interacting with diverse intentions, and the particularities of each schoolyard. The consequences of individualizing choice were highlighted as central to the production of inclusion and exclusion in schoolyards. Greater consideration of how children’s play and teachers” practices occur as collective occupations, is proposed to advance inclusive schoolyards. 

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  • 4.
    Bergin, Michelle
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation. Department of Occupational Science and Occupational Therapy, University College Cork, VGV5+95, Cork, Ireland.
    Boyle, Bryan
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Prellwitz, Maria
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Irish Traveller Children's Play: A Scoping Review2023In: Journal of Child and Family Studies, ISSN 1062-1024, E-ISSN 1573-2843, Vol. 32, p. 3860-3875Article, review/survey (Refereed)
    Abstract [en]

    Irish Traveller children, an ethnic indigenous minoritized community in Ireland are identified in Ireland’s play policy as at higher risk of exclusion from realising their right to play, alongside a reported absence of research on indigenous children’s play. This scoping review aimed to identify the breadth and scope of available research on representations of Irish Traveller children’s play and the factors influencing play opportunities. Applying the updated Joanna Briggs Institute methodological guidance, a systematic search was completed of nine databases. Thirty-five peer reviewed studies met the inclusion criteria, descriptive study information was charted and summarised and enabling and restricting factors influencing Irish Traveller children’s play were identified using an existing conceptual model. The scoping review findings revealed a limited focus within research on Irish Traveller children’s play. Included studies however, provided evidence of; the importance of feeling a sense of belonging and safety to enable Irish Traveller children’s access to preferred play opportunities, involving real life activities, physical play outdoors and play with others; Irish Traveller parents value and facilitation of play; and the significant restricting influence of racism on Irish Traveller children’s play .Limited knowledge on Irish Traveller children’s own perspectives on play and the need to address racism as a restricting influence on play in school and community environments are considered in relation to practice and further research. Discourses representing Irish Traveller children as marginalised, were problematized as reflective of culturist assumptions, and a shift towards understanding the situated nature of Irish Traveller children’s play, as a capability is proposed.

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  • 5.
    Björklund, Cecilia
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Erlandsson, Lena-Karin
    Department of Health Sciences, Lund University.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Temporal Patterns of Daily Occupations Related to Older Adults' Health in Northern Sweden2015In: Journal of Occupational Science, ISSN 1442-7591, E-ISSN 2158-1576, Vol. 22, no 2, p. 127-145Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to identify characteristics of temporal patterns of daily occupations that could be related to high and low subjective health among older adults in Northern Sweden. A cross-sectional design imprinted by time-geographic methodology was used and participants 70 years and older were purposively selected and divided into groups of high and low health using the SoC-29 and SF-36 questionnaires. Daily occupations data were registered and analysed using VISUAL Time-PAcTS and related to health conditions using SPSS. The results showed that the participants in the high- and low-health groups showed similar patterns of participation in occupations during the 24-hour sequences describing their daily routines. Some differences in patterns of frequency and duration of occupations were shown between health groups during the 24-hour sequences as well as within six intervals. The low-health group showed higher frequencies and longer durations for “care for oneself” and “reflection and recreation” occupations and lower for “house-keeping” and “procure and prepare food” occupations compared to the high-health groups. There were few significant differences between the high- and low-health groups' mean durations for occupations. The results of this study could contribute to the support and assistance of occupations of older adults in society.

  • 6.
    Borell, Lena
    et al.
    Stockholm Gerontology Research Center, Department of Clinical Neuroscience and Family Medicine, Section of Geriatric Mediant, Karolinska Institute, Stockholm University College of Health Sciences.
    Lilja, Margareta
    Carlsson-Alm, Siv
    Stockholm Gerontology Research Center, Department of Clinical Neuroscience and Family Medicine, Section of Geriatric Mediant, Karolinska Institute, Stockholm University College of Health Sciences.
    Törnquist, Kristina
    Stockholm Gerontology Research Center, Department of Clinical Neuroscience and Family Medicine, Section of Geriatric Mediant, Karolinska Institute, Stockholm University College of Health Sciences.
    Ståhl, Eva
    Stockholm Gerontology Research Center, Department of Clinical Neuroscience and Family Medicine, Section of Geriatric Mediant, Karolinska Institute, Stockholm University College of Health Sciences.
    Community-based Occupational Therapy: A Study of Elderly People with Home Help in a Social-Welfare District in Stockholm1995In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 2, no 3-4, p. 138-144Article in journal (Refereed)
    Abstract [en]

    Since 1992 the local authorities in Sweden have been responsible for the rehabilitation of elderly people living at home. Few studies of this relatively new form of rehabilitation have been reported. The aim of this study was to describe the type of occupational- therapy interventions received by elderly people over the age of 65 living in an urban area. Another aim was to describe the patterns in the performances of 648 elderly people. The study demonstrated that most of the elderly people who received occupational therapy also received home help several times a day. indicating that these elderly people had severe problems in the activities of daily living (ADL) in the area of self-care. Home-making activities and activities outside the home were the most problematic activities. The elderly also wanted to engage in more activities than they were judged to have the capacity for and or the environmental support to do. The implications of the results for community-base, occupational-therapy programs are discussed

  • 7.
    Borell, Lena
    et al.
    Department of Clinical Neuroscience, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Svidén, Gerd Andersson
    Department of Clinical Neuroscience, Division of Occupational Therapy, Karolinska Institutet.
    Sadio, Gaynor
    School of Healthcare Professions, Division of Occupational Therapy, University of Brighton.
    Occupations and Signs of Reduced Hope: An Explorative Study of Older Adults with Functional Impairments2001In: American Journal of Occupational Therapy, ISSN 0272-9490, E-ISSN 1943-7676, Vol. 55, no 3, p. 311-316Article in journal (Refereed)
    Abstract [en]

    Objective. The purpose of this explorative study was to uncover and interpret the experiences, values, and meaning of being in daily occupations of older adults with functional impairments. Method. Interviews were conducted with 21 older adults with disabilities who were between 70 and 92 years of age. The interviews occurred in their home environments; 18 of the 21 participants lived alone. The interviews were analyzed using a constant comparative approach. Findings. Occupational themes related to participation against the odds, retreat from occupation, the need for an invitation from others, and personal meanings related to capacities for occupation were uncovered. Conclusions. The findings suggest that the loss of positive belief in enjoyable occupations can be a sign of reduced hope in late life. For occupational therapists, whether an older adult has made a conscious choice to withdraw from occupational life or has too few occupational choices is important to distinguish.

  • 8.
    Carabante, Jenni Riekkola
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Spousal caregivers' experiences of participation in everyday life when using respite care2016Conference paper (Refereed)
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  • 9. Carlsson.Alm, Siv
    et al.
    Lilja, Margareta
    Etiska konflikter vid rehabilitering1995In: Medicinsk etik, Stockholm: Bonnier utbildning , 1995, p. 48-58Chapter in book (Other (popular science, discussion, etc.))
  • 10.
    Dolva, Anne Stine
    et al.
    Lillehammer University College.
    Coster, Wendy Jane
    Boston University, Department of Rehabilitation Science, Programs in Occupational Therapy, Boston University.
    Lilja, Margareta
    Functional performance in children with Down syndrome2004In: American Journal of Occupational Therapy, ISSN 0272-9490, E-ISSN 1943-7676, Vol. 58, no 6, p. 621-629Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to describe home and community functional performance in 5-year-old children with Down syndrome. METHOD. In a cross-sectional study of 5-year-old children with Down syndrome in Norway (N = 43), functional performance was measured with the Norwegian translation of the Pediatric Evaluation of Disability Inventory (PEDI). Additional descriptive information related to health, disabilities, and function was also gathered. RESULTS. The children showed a wide range of functional performance. Performance of self-care activities appeared most delayed on activities that required fine motor skills. Children appeared less affected in basic functional mobility skills. Parents' identified their main concerns as language functioning and, for the children not yet toilet trained, the management of bladder and bowel control in relation to starting school. CONCLUSION. The results provide baseline information regarding typical levels of functional performance in children with Down syndrome at 5 years of age. However, the broad range of functional performance across children indicates a need for caution in generalizing the results to an individual child.

  • 11.
    Dolva, Anne Stine
    et al.
    Lillehammer University College.
    Lilja, Margareta
    Hemmingsson, Helena
    Department of Occupational Therapy, Karolinska Institutet.
    Functional performance characteristics associated with postponing elementary school entry among children with down syndrome2007In: American Journal of Occupational Therapy, ISSN 0272-9490, E-ISSN 1943-7676, Vol. 61, no 4, p. 414-420Article in journal (Refereed)
    Abstract [en]

    This study investigated the relation between functional performance skills of children with Down syndrome and the age of entry into mainstream elementary education. METHOD. In a cross-sectional study of 70% of the 7-year-old children with Down syndrome in Norway (N= 43), we measured functional performance using the Pediatric Evaluation of Disability Inventory (PEDI). The study was a follow-up of a previous study of the same children at age 5 assessed using the same instrument. Data from both studies were used in the analysis. RESULTS. Forty percent of the sample of children with Down syndrome in Norway had entered elementary school after a 1-year postponement (i.e., at age 7). The functional performance skills of the children, as measured using the PEDI, were significantly lower at both age 5 and age 7 in self-care and social function compared with children with Down syndrome who entered elementary school at the usual time (i.e., at age 6). The main characteristics associated with postponed elementary school entry were found in communication skills and bladder and bowel management. CONCLUSION. A certain level of development and independence seems to be required for a child with Down syndrome to be viewed as ready to enter elementary school, and perceptions of readiness for school may be culturally dependent. In addition to the well-described challenges in language and communication skills, being viewed as ready for school includes having stopped using diapers, a topic not previously mentioned as a factor in postponing elementary school entry for children with Down syndrome. Awareness of culturally influenced performance skills may give direction to parents and professionals in targeting areas in the preschool years that might help promote these children's readiness for school.

  • 12.
    Eriksson, Gunilla
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Jonsson, Hans
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Petersson, Ingela
    Division of Occupational Therapy, NVS, Karolinska Institutet, Huddinge.
    Tatzer, Verena
    University of Applied Sciences Wiener Neustadt.
    Occupation of Elderhood2015In: Occupational therapy: performance, participation and well-being, Thorofare, NJ, USA: SLACK Incorporated , 2015, 4, p. 169-183Chapter in book (Refereed)
  • 13.
    Eriksson, Gunilla
    et al.
    Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden; R&D–Neurology Division, University Hospital Uppsala, Sweden.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Jonsson, Hans
    Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden.
    Petersson, Ingela
    Tatzer, Verena C.
    Department of Occupational Therapy, University of Applied Sciences Wiener Neustadt, Wiener Neustadt, Austria.
    Occupations of Elderhood2024In: Occupational Therapy: Performance Participation, and Well-Being / [ed] Charles H. Christiansen; Julie Bass; Carolyn M. Baum, Taylor and Francis , 2024, 4, p. 169-183Chapter in book (Other academic)
  • 14.
    Isaksson, Gunilla
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Carabante, Jenni Riekkola
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Womack, Jennifer L.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Challenges in occupational therapy when providing home-based rehabilitation for senior citizens2016In: 1st CONTEC-ENOTHE Congress: National University of Ireland, Galway 15-19 June 2016, 2016, p. 325-Conference paper (Refereed)
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  • 15.
    Johansson, Karin Mauri
    et al.
    Division of Occupational Therapy, Karolinska Institutet.
    Borell, Lena
    Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Older persons' navigation through the service system towards home modification resources2009In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 16, no 4, p. 227-237Article in journal (Refereed)
    Abstract [en]

    Home modifications are part of the occupational therapy interventions provided to persons with functional limitations in the home environment. Home modification services often involve many different actors, and persons experiencing a need for home modifications have to navigate through a network of service organizations and professional actors. The aim of this study was to explore and describe how older adults in one Swedish municipality tried to find their way and navigate through the service system in order to receive home modification services that could meet their experienced needs. A case study design was used, including four older adults with different experiences and expectations of home modification services. The relationship between the participants' expectations, experiences, and their ways to navigate through the service system was described through the metaphor of a "geographical map". Satisfaction with the service process was found when there was a match in understandings of responsibilities and eligibility between what could be read from the older persons' map and the professionals' perspective. The findings have implications for client-centred occupational therapy practice, indicating that this match can be achieved when professionals translate clients' experienced problems in everyday life into a terminology that fits into the service system. ©

  • 16.
    Johansson, Karin Mauri
    et al.
    Department of Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Josephsson, Staffan
    Department of Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Creating possibilities for action in the presence of environmental barriers in the process of 'ageing in place'2009In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 29, no 1, p. 49-70Article in journal (Refereed)
    Abstract [en]

    The need for an understanding of 'ageing in place' as a progressive process has emerged among researchers in the field of environmental gerontology. The aim of this study was to explore this process, in relation to home modification services. Four older adults who had applied for home modification services in one Swedish municipality were included. Data were collected by open interviews with the participants in their homes on subsequent occasions, from before the modification had been installed until recognised stability in the situation relating to the home modification. In the analysis, the concept of place integration was used as a tool to explore the active relations that connect people and context over time. The main findings show that the participants used creativity and initiative to direct future situations towards increased possibilities for action. This indicates that services aiming to support people 'ageing in place' should be directed towards increasing possibilities for action rather than only facilitating activity performance. Furthermore, it can be concluded that if the service-users' creativity and efforts are recognised as resources in design and provision of services, services that aim to support individuals who are ageing in place have the potential to be empowering

  • 17.
    Johansson, Karin Mauri
    et al.
    Department of Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Park, Melissa
    Department of Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Josephsson, Staffan
    Department of Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Balancing the good: a critical discourse analysis of home modification services2010In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 32, no 4, p. 563-582Article in journal (Refereed)
    Abstract [en]

    Today an increasing number of people with functional limitations are ageing in their homes. Although the home has become an arena for assessment and implementation of services, little is known about how the interrelationships between ideological and practical circumstances influence the allocation of such welfare services. This explorative study applied a combination of critical discourse analysis and a narrative approach to closely examine such relationships in home modification services to older persons in Sweden. Data consisted of focus group discussions with street-level bureaucrats from two institutional contexts in the organisational field of home modification services and official documents related to such services. Findings showed that the attempts of street-level bureaucrats to allocate resources in accordance with the good were complicated by competing local definitions of 'the good'. The process of forming local perceptions of the good included complex balancing acts between hegemonic discourses within the organisational field which influenced and shaped how 'the good' was practised. Understanding the moral dimensions that enter into the complexity of allocation of home modification services across institutional settings has implications for the policies of and practices for the allocation of welfare resources.

  • 18.
    Johansson, Karin Mauri
    et al.
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Lilja, Margareta
    Petersson, Ingela
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Borell, Lena
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Performance of activities of daily living in a sample of applicants for home modification services2007In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 14, no 1, p. 44-53Article in journal (Refereed)
    Abstract [en]

    Home modification services are provided to support persons with functional limitations to live independently at home. It is not well known what causes individuals to apply for home modifications, or in what kind of life situation this need appears. The aim of this study was to examine the relationship between performance of activities of daily living, housing and living situation, and the home modification applied for in a sample of home modification applicants. Further, the aim was to examine differences in performance of activities of daily living between subgroups with different social support. A total of 102 participants were included in the study. Data on performance of activities of daily living was collected through interviews in the participants' homes, using structured instruments. The participants reported high levels of independence in activities of daily living, and were using assistive devices to a large extent. However, the applicants clearly experienced difficulties in performing activities related to the applied home modification. The study indicates that the main reason for applying for Home Modification Grants was perceived difficulties in performance of activities of daily living. This stresses the importance of including other aspects besides independence when trying to understand persons' activity performance and planning for occupational therapy interventions.

  • 19. Lilja, Margareta
    Coaching av äldre vid rehabilitering i hemmet2001In: Vård : utbildning, utveckling, forskning, ISSN 0281-921X, no 1, p. 30-2Article in journal (Other academic)
  • 20. Lilja, Margareta
    Elderly disabled persons in the home setting: aspects of activities in daily life2000Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to explore and describe elderly disabled persons' activities in daily life in the home environment from an occupational perspective and, secondly to describe occupational therapy interventions provided to elderly disabled persons in their home setting. Study I explored and described elderly persons' performance in ADL, and occupational therapy interventions provided. Most of the participants wanted to engage in more activities than they were judged to have the capacity and/or environmental support for. Hobby activities outside/inside the home, taking a bath or shower, washing clothes, and cooking were activities presenting significant problems. Participants who received occupational therapy experienced problems regarding self-care. Assessment and assistive devices were the most common occupational therapy interventions provided in the study. Study II focused on participants from study I that had an elevator in their housing and their need for mobility support in the environment. Social contacts in the home and weekly shopping were activities where no major difference could be seen between those elderly persons who needed assistance using the elevator and those who managed the elevator alone. Mobility was not only related to a person's bodily function but also to social support from the environment. Study III explored and described occupational therapy intervention patterns over two periods. Treatment/training, prevention in everyday activities and information/consultation increased from period I to period 2, while interventions concerning assistive devices decreased. Treatment/training during both periods concerning leisure/recreation activities, whilst interventions concerned consultation seemed to be changing over time from focusing on clients to relatives and home help staff. Study IV aimed at uncovering and interpreting elderly disabled persons' experiences, values and meanings of being engaged in daily occupations. Themes related to participation against the odds, retreat from occupation, the need for an invitation from others, and personal meanings related to capacities for occupations were uncovered. The findings suggest that for occupational therapy it is important to distinguish between when a person has made a conscious choice to withdraw from occupational life and when a person, for example, has to few occupational choices. Study V described and evaluated a clinical attempt to change occupational therapy practice when reporting clients between occupational therapists in the chain of care. The ADL taxonomy was used as an instrument for transferring the information. It was seen as useful for this purpose but there was still a need for reporting clients orally. Aspects of temporality, structure, professionalism and the instrument's usefulness overall influenced the transfer of information. Systematic discharge planning schemes, written and formally structured information, feedback loop for communication, and collaboration with the clients and their families in the discharge process are suggested as guidelines for the transfer of information. Implications of the studies for occupational therapy for elderly disabled persons in the home setting are proposed in the discussion section.

  • 21. Lilja, Margareta
    Äldres rehabiliteringsbehov i hemmiljö2001Report (Other academic)
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  • 22. Lilja, Margareta
    et al.
    Bergh, Anders
    National Board of Health/Welfare.
    Johansson, Lennarth H.
    National Board of Health/Welfare.
    Nygård, Louise
    Department of Neurotec, Occupational Therapy Division, Karolinska Institutet.
    Attitudes towards rehabilitation needs and support from assistive technology and the social environment among elderly people with disability2003In: Occupational Therapy International, ISSN 0966-7903, E-ISSN 1557-0703, Vol. 10, no 1, p. 75-93, article id 15Article in journal (Refereed)
    Abstract [en]

    This study aimed to survey the attitudes of elderly people with disabilities who were living at home regarding their support from assistive technology and the social environment. These attitudes were compared with their identified needs by an occupational therapist and in relation to perception of social engagement, loneliness and overall contentment with life. From a sample of 102 participants who were interviewed using a standardized procedure, 53 persons were included in the study. The results indicated that attitudes among elderly people towards social and occupational engagement and change have a greater influence on their rehabilitation status than their disability as indicated by their health condition and limitations in activities of daily living and instrumental activities of daily living. The elderly people who accepted rehabilitation were more able, and were better equipped and better supported with assistive technology, than those who declined rehabilitation. Rehabilitation needs that the occupational therapists recognized were not always shared by the disabled elderly people, for several reasons; one reason of particular importance was the elderly person's attitude towards change and social engagement. However, the small sample size limits the generalization of the findings to the population of elderly people with disabilities. An ethnographic research design that allows for repeated interviews and observations of elderly people with disabilities for a prolonged period of time in their ordinary everyday lives may present an avenue for future research and lead to a deeper understanding of the issues

  • 23. Lilja, Margareta
    et al.
    Borell, Lena
    Department of Clinical Neuroscience and Family Medicine, Section of Geriatric Medicine, Stockholm University College of Health Sciences.
    Elderly people's daily activities and need for mobility support1997In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 11, no 2, p. 73-80Article in journal (Refereed)
    Abstract [en]

    The aim of the present study is to describe elderly people's performance of some daily activities in relation to their need for mobility support in their living environment. Two groups of individuals, over the age of 65 and living in an old urban area with access to elevators in their housing, were compared, as regards mobility, shopping, hobbies and social contacts. The first group (n = 284) comprised persons who needed assistance from another person in using the elevator. The subjects in the second group (n = 325) were able to manage the elevator independently. The subjects in the first group experienced more problems in carrying out the activities than those in the second group. Weekly shopping was the only action in which the findings demonstrated no main differences between the groups. Throughout all the activities of daily living (ADL), and in both groups, there were persons who were rated as having the capacity to perform the activities, but did not do so and did not want to do so. The elderly, especially in the first group, wanted to engage in more activities than they were judged to have the capacity for and/or the environmental support to do. The implications of the result for the assessment of the homes of the elderly in relation to their environment are discussed.

  • 24. Lilja, Margareta
    et al.
    Borell, Lena
    Division of Occupational Therapy, Karolinska Institutet, Department of Clinical NeuroScience, Occupational Therapy and Elderly Care Research.
    Occupational therapy practice patterns with older Swedish persons at home2001In: Canadian Journal of Occupational Therapy / Revue Canadienne d`Ergotèrapie, ISSN 0008-4174, Vol. 68, no 1, p. 51-59Article in journal (Refereed)
    Abstract [en]

    This paper explores and describes occupational therapy practice patterns during two periods for 89 elderly persons living at home. Occupational therapists working in one social welfare district in Stockholm, Sweden documented and reported every occupational therapy intervention provided. The results revealed that the elderly persons who received occupational therapy services during an extended period had an age span of 30 years, with a mean age over 80 years. They had several medical problems and were living in different types of settings. Occupational therapists provided a wide range of interventions, most frequently categorised as treatment, especially related to leisure activities. Irrespective of level of care, the median of interventions per person increased or was the same over time, and 72% of the elderly persons remained at the same level of care. Enabling occupation for elderly disabled person living in their home involves constantly adjusting to the current situation since the clients' capacities, goals and environment change over time. Therefore, occupational therapists need to have a client-centred approach working in home health community services

  • 25.
    Lilja, Margareta
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Borell, Lena
    Division of Occupational Therapy, Karolinska Institutet.
    Svidén, Gerd Andersson
    Department of Clinical Neuroscience, Division of Occupational Therapy, Karolinska Institutet.
    Sadio, Gaynor
    School of Healthcare Professions, Division of Occupational Therapy, University of Brighton.
    Occupational and signs of reduced hope: An explorative study of older adults with functional impariments2003In: Geriatric Issues in Occupational Therapy: A Compendium of Leading Research / [ed] Mary Corcoran, Bethesda, MD: AOTA Press , 2003, Vol. 1, p. 79-87Conference paper (Refereed)
  • 26.
    Lilja, Margareta
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Borell, Lena
    Svidén, Gerd Andersson
    Sadio, Gaynor
    Occupations and signs of reduced hope: An explorative study of older adults with functional impairments2003In: Geriatric issues in occupational therapy: a compendium of leading research, Bethesda, MD: AOTA Press , 2003Chapter in book (Refereed)
  • 27.
    Lilja, Margareta
    et al.
    Karolinska institutet, Sektionen för arbetsterapi.
    Johansson, Karin
    Karolinska institutet, Sektionen för arbetsterapi.
    Petersson, Ingela
    Karolinska institutet, Sektionen för arbetsterapi.
    Äldres boende - forskningsperspektiv i Norden: Bostadsanpassning - Ett stöd för vardagen?2012In: Äldres boende - forskningsperspektiv i Norden / [ed] Marianne Abrahamsson; Catharina Nord, Lund: Studentlitteratur AB, 2012, Vol. 1, p. 121-137Conference paper (Refereed)
  • 28.
    Lilja, Margareta
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Josephsson, Staffan
    bSør-Trøndelag University College, Norwegian University of Science and Technology (NTNU).
    Participation from the perspective of the user: From subjective experiences to lived experiences2017In: Participation in health and welfare services: Professional concepts and lived experience, Taylor & Francis, 2017, p. 33-40Chapter in book (Refereed)
  • 29. Lilja, Margareta
    et al.
    Månsson, Ingela
    Jahlenius, Leif
    Sacco-Peterson, Maryanne
    Disability policy in Sweden: policies concerning assistive technology and home modification services.: An article from: Journal of Disability Policy Studies2003In: Journal of Disability Policy Studies, ISSN 1044-2073, E-ISSN 1538-4802, Vol. 14, no 3, p. 130-135Article in journal (Refereed)
  • 30. Lilja, Margareta
    et al.
    Nygård, Louise
    Department of Clinical NeuroScience, Occupational Therapy and Elderly Care Research, Karolinska Institutet.
    Biorell, Lena
    Department of Clinical NeuroScience, Occupational Therapy and Elderly Care Research, Karolinska Institutet.
    The transfer of information about geriatric clients in the occupational therapy chain of care: An intervention study2000In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 7, no 2, p. 51-59Article in journal (Refereed)
    Abstract [en]

    Continuity of interventions for elderly persons after discharge from hospital is affected by the communication between professionals involved in the rehabilitation process. This study describes an intervention project that was implemented to improve ways of transferring information relating to geriatric clients between occupational therapists working on different organizational levels. An assessment of activities of daily living (the ADL taxonomy) was used as a uniform instrument of communication. The results revealed that aspects of temporality, structure, professionalism and the instrument's usefulness influenced the transfer of information. Systematic discharge planning schemes, written and formally structured information, a feedback loop for communication, and collaboration with the clients and their families in the discharge process are all suggested as ways of transferring information.

  • 31.
    Lundström, Ulrica
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Äldres rehabilitering i särskilt boende: allt faller om den sista länken brister2003Report (Other academic)
  • 32.
    Lundström, Ulrica
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Gray, David
    Disability and Community Participation Research Office (DACPRO), Washington University School of Medicine.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Experiences of participation in everyday occupations among persons aging with a tetraplegia2015In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 11, p. 951-957Article in journal (Refereed)
    Abstract [en]

    This study aimed to gain understanding of participation in everyday occupations through life stories of persons aging with a traumatic spinal cord injury (SCI). Method: A narrative method was used for data collection and a paradigmatic analysis was used to analyze data. Results: The analysis resulted in three themes that illustrate how the participants acted to participate in everyday occupations, how that changed over time, and some concerns about their future. The first theme illustrates how participants following SCI acted to become agents of their lives and participate in everyday occupations. The second theme illustrates how participants had to prioritize participation in meaningful occupations due to personal and environmental factors. The third theme shows how they had to try new strategies to continue participation in occupations, due to secondary health complications related to aging. Conclusions: This study captures how persons aging with tetraplegia acted to participate in everyday occupations from soon after the injury until several decades later. In addition, their ability to act and participate changed over time. Our findings provide knowledge that can guide clinicians in their work within this complex area of rehabilitation. Besides, it can also guide the work with policy recommendations for healthcare and social service systems.Implications for Rehabilitation

  • 33.
    Lundström, Ulrica
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab. Department of Health Sciences, Lunds University.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    "To Work Just Like Anyone Else": a narrative from a man aging with spinal cord injury2017In: Healthcare, E-ISSN 2227-9032, Vol. 5, no 4, article id 87Article in journal (Refereed)
    Abstract [en]

    People aging with spinal cord injury (SCI) develop medical problems commonly associated with the aging process at a younger age than the general population. However, research about how the life story changes and how meaning will be experienced in occupations is lacking. The aim was to describe and offer an explanation of how a man experienced meaning in everyday occupations while aging with an SCI. Four narrative interviews were performed over a four-year period, with a man in his fifties, who lived with SCI for 39 years. The narrative analysis generated an overall plot, named "To Work Just Like Anyone Else," and gives a picture of his experiences, thoughts, and reflections about meaning in occupations, from when he became injured to the present, and in relation to his future. His life story is characterized by secondary health complications, and his experiences of negotiating with the aging body and making choices to continue working. Further, how occupational risk factors, e.g., imbalance, alienation, and deprivation, occur as a result of lack of rehabilitation and support from social systems is addressed. Future research should explore how rehabilitation and social systems can support people aging with SCI to experience meaning in everyday occupations and to have balance in everyday life.

  • 34.
    Lundström, Ulrica
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Petersson, Ingela
    Sektionen för arbetsterapi/Institutionen NVS/Karolinska institutet.
    Lexell, Jan
    Institutionen för Hälsovetenskap, Lunds universitet/Avdelningen för rehabiliteringsmedicin, Lunds Universitetssjukhus.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Leisure repertoire among persons with a spinal cord injury: Interests, performance, and well-being2014In: Journal of Spinal Cord Medicine (JSCM), ISSN 1079-0268, E-ISSN 2045-7723, Vol. 37, no 2, p. 186-192Article in journal (Refereed)
    Abstract [en]

    Objective: To explore and describe the leisure repertoire of persons with traumatic spinal cord injury (SCI) and how the repertoire is related to interest, performance, and well-being.Design: Cross-sectional study.Setting: A total of 97 persons with traumatic SCI were recruited from the non-profit national organization, RG Active Rehabilitation in Sweden.Outcome measure: Data were collected through a two-part postal survey. The first comprised of questions investigating socio-demographic variables and injury characteristics; the second part included an interest checklist with 20 areas of leisure activities.Results: The participants were mostly interested in, performed, and experienced well-being from social and culture activities and TV/DVD/movies. The areas of leisure activities in which they had most likely experienced changes after the SCI were outdoor activities, exercise, and gardening. Gender, age, and to some extent, time since injury were related to interest, performance, well-being, and changed performance.Conclusions: The results provided an explanation and limited description of a changed leisure repertoire among persons after a traumatic SCI. The study showed that gender, age, and time since injury were more closely related to the choice of leisure activities to include in the leisure repertoire than the level of injury. This knowledge can be of importance when professionals in the field of rehabilitation are planning and implementing interventions concerning leisure activities for persons with SCI.

  • 35.
    Lundström, Ulrica
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Wahman, K.
    Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Seiger, Å.
    Division of Neurodegeneration, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Gray, D B
    Department of Neurology, Disability and Community Participation Research Office (DACPRO), Washington University School of Medicine, St Louis, MO, USA.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Participation in activities and secondary health complications among persons aging with traumatic spinal cord injury2017In: Spinal Cord, ISSN 1362-4393, E-ISSN 1476-5624, Vol. 55, no 4, p. 367-372Article in journal (Refereed)
    Abstract [en]

    STUDY DESIGN:

    Cross-sectional study.

    OBJECTIVES:

    To describe participation in activities and explore the relationship with secondary complications among persons aging with a traumatic spinal cord injury (SCI).

    SETTING:

    A regional SCI outpatient center in Sweden.

    METHODS:

    Data were collected through a phone survey, which included 10 activities from the instrument PARTS/M-v3 (PARTicipation Survey/Mobility version-3) together with data from the participants' medical records. Cross-tabulation and χ2 were used for data analysis.

    RESULTS:

    In this study, 121 persons matched the inclusion criteria and the final study sample comprised 73 participants (60% response rate): 55 men and 18 women. Mean age was 63.7±9.4 years, and mean time since injury was 36.3±9.2 years. Regardless of duration of SCI, all 73 participated in dressing, bathing and leisure activities. Women reported better health than men. Particularly for those who lived 36-55 years after injury; increasing pain, fatigue, spasticity and decreased muscle strength were negatively affecting participation in activities, especially exercise and active recreation. Additionally, a need to save strength/energy was also a reason for not participating in the activities. Perceived future support and concerns in relation to personal assistance, assistive devices and rehabilitation was also reported.

    CONCLUSION:

    Increasing secondary health complications and a need to save strength/energy influenced participation in activities. Laws and/or governmental policies regarding personal assistance and assistive devices did not always support participation in activities. Interventions should aim to create a balance among activities in everyday life

  • 36.
    Nilsson, Ines
    et al.
    Luleå University of Technology, Department of Health Sciences. Department of Occupational Therapy, Sunderby hospital, Luleå.
    Fitinghoff, Hélène
    Department of Neurotec, Division of Occupational Therapy, Karolinska Institutet, Huddinge, Sweden.
    Lilja, Margareta
    Department of Neurotec, Division of Occupational Therapy, Karolinska Institutet, Huddinge, Sweden.
    Continuing to work after the onset of rheumatoid arthritis2007In: Work: A journal of Prevention, Assessment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 28, no 4, p. 335-342Article in journal (Refereed)
    Abstract [en]

    The aim of this qualitative study was to explore and describe what have made it possible for a group of people with rheumatoid arthritis to remain in work. There were ten participants, six women and four men, aged from 32 to 59. They were working either full time or part-time, at the time the study was conducted. Data was gathered using focus group interviews. The transcribed interviews were analysed in accordance with the constant comparative method. The result showed that the assets the individuals possessed and the character of the environment in which they worked were important reasons why they were able to remain in employment. Four main categories were identified: the constructive value of work, the characteristics of work, physical health and well-being and the understanding and support of colleagues. The findings support a client-centred occupational therapy and rehabilitation, where the experiences of the person provide the reason for the intervention.

  • 37.
    Nygård, Louise
    et al.
    Division of Occupational Therapy, NVS, Karolinska Institutet, Huddinge.
    Starkhammar, Sofia
    Division of Occupational Therapy, NVS, Karolinska Institutet, Huddinge.
    Lilja, Margareta
    The provision of stove timers to individuals with cognitive impairment2008In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 15, no 1, p. 4-12Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to identify the characteristics of persons who were provided with timing devices on stoves, and to investigate the application procedure and recommendations for timer options. The case files at an Agency for Home Modifications in an urban community in Sweden during 2002 (n = 945) were audited. The sample was divided into two groups: those diagnosed or suspected of dementia or age-related memory deficits (n = 788), and those with other diagnoses (n = 151). Overall, the applicants for stove timers were elderly females, living alone. Assistance with the application forms by health professionals was common in both groups. However, the options available for tailoring the use of the device were not used consistently and the opportunity for professional follow-up appeared limited. The device seemed to be used as a safety precaution rather than as a device to support independent activity performance based on individual users' needs. The results indicate that improvements in the implementation and provision of stove timers could be achieved through education and collaboration between different stakeholders.

  • 38.
    Nyman, Anneli
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    The Process of Using Participatory Action Research when Trying out an ICT Solution in Home-Based Rehabilitation2022In: International Journal of Qualitative Methods, E-ISSN 1609-4069, Vol. 21Article in journal (Refereed)
    Abstract [en]

    This article describes the process of using PAR and discusses the strengths and challenges of adopting it as a methodology. With a pilot project “the rehabilitation journey” as a showcase, we share experiences of how we co-created knowledge and illustrate the actions taken and participants’ involvement in the process. This pilot project aimed to explore how ICT solutions can create new ways to deliver home-based rehabilitation that meet the needs of the organization, rehabilitation professionals, and older persons. Our experience is that using PAR as a research method had several strengths. Our project stemmed from demographic and epidemiological trends in society viewed as a “real life problem” experienced on different levels in the organization of home-based rehabilitation. At the same time, PAR was a challenging research method to use, as it was time-consuming and required the commitment and contribution over time of the different participants involved. There were also specific challenges that had to be considered regarding routines and regulations, as the pilot project was conducted in a health care context. This article aspires to offer methodological guidelines by using a six-step method to illustrate a PAR process. We propose that these guidelines can act as a tool to guide researchers in carrying out PAR.

  • 39.
    Nyman, Anneli
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Zingmark, Magnus
    Health and Social Care Administration, Municipality of Östersund, Östersund, Sweden; Department of Epidemiology and Global Health, Umeå University, Umeå, Sweden; Department of Health Sciences, Lund University, Lund, Sweden.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Learning and Technology, Health, Medicine and Rehabilitation.
    Guidetti, Susanne
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institute, Huddinge, Sweden; Women’s Health and Allied Health Professionals Theme, Medical Unit Occupational therapy and Physiotherapy, Karolinska University Hospital, Sweden.
    Information and communication technology in home-based rehabilitation – a discussion of possibilities and challenges2023In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 30, no 1, p. 14-20Article in journal (Refereed)
    Abstract [en]

    Background: Information and communication technology (ICT) has been proven to have effect in terms of providing alternative ways to deliver rehabilitation services. The intention with this paper is to serve as a foundation for discussions regarding the future development, design, and delivery of home-based rehabilitation, including ICT.

    Aim: To reflect on and discuss the possibilities and challenges of using ICT in home-based rehabilitation services.Method and material: We use experiences and results from various projects to reflect on and discuss possibilities and challenges related to the use of ICT in home-based rehabilitation.

    Findings and discussion: We exemplify how ICT present new possibilities that can increase the quality of the rehabilitation process and improve access to services. We reflect on some challenges in the use of ICT, related to non-user-friendly solutions, to the specific rehabilitation situation, and a lack of technical support. At an organisational level, readiness to use ICT can impact the extent to which new solutions are integrated into practice.

    Conclusion: We emphasise that ICT has the potential to develop and improve service delivery and contribute to increased quality and accessibility of home-based rehabilitation.

  • 40.
    Petersson, Ingela
    et al.
    Department Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Fisher, Anne C.
    Division of Occupational Therapy, Department of Community Medicine and Rehabilitation, Umeå University.
    Hemmingsson, Helena
    Department Neurobiology, Caring Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    The client-clinician assessment protocol (C-CAP: Evaluation of its psychometric properties for use with people aging with disabilities in need of home modifications2007In: OTJR (Thorofare, N.J.), ISSN 1539-4492, E-ISSN 1938-2383, Vol. 27, no 4, p. 140-148Article in journal (Refereed)
    Abstract [en]

    The objective of this study was to evaluate aspects of the validity and reliability of the Client-Clinician Assessment Protocol (C-CAP) Part I. C-CAP data for 103 people aging with disabilities in need of home modification services were analyzed using the Rasch rating scale model. The C-CAP Part I consists of a client self-report of ability in daily life tasks comprising three scales (independence, difficulty, and safety). The analysis demonstrated support for internal scale validity, person response validity, and person separation reliability of the C-CAP Part I, although the results differed among the three scales. The results of this study indicated that the C-CAP Part I has psychometric strengths and limitations. The instrument has the potential to be used in the home environment with people who are aging with disabilities. The C-CAP could complement already existing tools that are used to assess functioning in activities of daily living, especially regarding the focus on the clients' self-report of difficulty and safety in daily life at home and in the community.

  • 41.
    Petersson, Ingela
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Kottorp, Anders
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Bergström, Jakob
    Department of Learning, Informatics, Management and Ethics, Medical Statistical Unit, Karolinska Institutet.
    Lilja, Margareta
    Longitudinal changes in everyday life after home modifications for people aging with disabilities2009In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 16, no 2, p. 78-87Article in journal (Refereed)
    Abstract [en]

    Objective: To investigate longitudinal impacts of home modifications on the difficulty of performing everyday life tasks for people aging with disabilities, and to investigate whether other factors had any additional impacts on difficulty in everyday life tasks for people receiving home modifications. Methods: The sample consisted of 103 persons aging with disabilities and in need of home modifications, divided into an intervention group and a comparison group. The data were first subjected to Rasch analysis and a random coefficient model was used. Results: Participants in the intervention group reported a significantly lower level of difficulty in everyday life tasks compared with those in the comparison group. One confounding factor, number of months waiting for home modification, had an impact on difficulty in everyday life. Conclusion: Home modifications are effective in decreasing difficulty in performing everyday life tasks up to six months after the installation. Furthermore, to be effective home modifications need to be installed in a timely fashion. For each consecutive month the person waited for their home modification the difficulty of performing everyday life tasks increased. Therefore, it is important that home modifications be installed as soon as possible after the need has been identified.

  • 42. Petersson, Ingela
    et al.
    Lilja, Margareta
    Vardagen efter bostadsanpassningar - förbättringar och hinder2011In: Arbetsterapeuten, ISSN 0345-0988, no 2, p. 1-4Article in journal (Other academic)
  • 43.
    Petersson, Ingela
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Hammel, Joy M.
    Department of Occupational Therapy, University of Illinois.
    Kottorp, Anders
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Impact of home modification services on ability in everyday life for people ageing with disabilities2008In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 40, no 4, p. 253-260Article in journal (Refereed)
    Abstract [en]

    Objective: To examine the impact of home modifications on self-rated ability in everyday life from various aspects for people ageing with disabilities. Methods: The study sample was recruited from an agency providing home modification services in Sweden and comprised 73 subjects whose referrals had been approved and who were scheduled to receive home modifications (intervention group) and 41 subjects waiting for their applications to be assessed for approval (comparison group). The subjects rated their ability in everyday life using the Client-Clinician Assessment Protocol Part I on 2 occasions: at baseline and follow-up. The Client-Clinician Assessment Protocol Part I provides data on the clients' self-rated independence, difficulty and safety in everyday life. The data were first subjected to Rasch analysis in order to convert the raw scores into interval measures. Further analyses to investigate changes in self-rated ability were conducted with parametric statistics. Results: Subjects who had received home modifications reported a statistically significant improvement in their self-rated ability in everyday life compared with those in the comparison group. Subjects who had received home modifications reported less difficulty and increased safety, especially in tasks related to self-care in the bathroom and transfers, such as getting in and out of the home. Conclusion: Home modifications have a positive impact on self-rated ability in everyday life, especially on decreasing the level of difficulty and increasing safety.

  • 44.
    Riekkola Carabante, Jenni
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts2019In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 25, no 6, p. 457-465Article in journal (Refereed)
    Abstract [en]

    Background: To promote health and well-being, and to meet the desires of the growing elderly population to age in place, elderly spousal caregivers need adequate support such as respite care services. More knowledge is needed about elderly spousal caregivers’ experiences in relation to participation, which is an aspect of health that remains relatively unexplored for this group.

    Aim: To explore and describe how elderly spousal caregivers experience and discuss participation in everyday life when living in shifting contexts due to the use of respite care.

    Method: A grounded theory approach was used during data generation and analysis, which involved repeated focus group interviews with 12 spousal caregivers.

    Results: Complexity and ambiguity was understood to imbue participation in everyday life. Being in charge of everyday life was challenging for spousal caregivers, and created a need for personal time. Respite care and home care service gave them time, although when interacting with social contexts other issues arose that influenced their own recovery.

    Conclusions: A holistic ‘situation centered’ approach that focuses on the elderly couple’s life story and needs might capture a wider perspective and enable adequate support that influences their health, well-being, and participation in everyday life.

  • 45.
    Riekkola, Jenni
    et al.
    Municipality of Luleå, Sweden.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health, Education and Technology, Health, Medicine and Rehabilitation.
    ‘Possibilities and challenges for older couples to continue ageing in place’2024In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 69, article id 101229Article in journal (Refereed)
    Abstract [en]

    Ageing in place is an imminent concern for both older couples and communities. Identifying ways to support ageing in place is required to meet the needs and challenges of older couples and social services systems. Through focus groups with a total of 46 participants and a constant comparative methodology, this study aimed to explore and describe the experiences and reasoning of spousal carers, healthcare professionals, and stakeholders regarding possibilities for older couples to age in place. The findings consisted of one main category, ‘Facilitating ageing in place is a win-win situation with challenges’ and four interrelated categories, ‘Focus on older couples – building relationships and providing adequate services’, ‘Engaged civil society as a source of care and social inclusion,’ ‘Motivated professionals with competence and time,’ and ‘Services working together for a sustainable society,’ that present possibilities and challenges for ageing in place. This study suggests that facilitating ageing in place is possible but involves a complex series of challenges that can be linked to different contexts ranging from individuals and couples to civil society, services provided, organisational systems, and existing resources. All these aspects need to be considered and balanced to achieve a situation that contributes to older couples' possibilities to age in place as well as to a sustainable society.

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  • 46.
    Riekkola, Jenni
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Healthcare professionals’ perspective on how to promote older couples’ participation in everyday life when using respite care2019In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 33, no 2, p. 427-435Article in journal (Refereed)
    Abstract [en]

    Aims

    The aim is to describe healthcare professionals’ perspectives on how they understand and promote older couples’ participation in everyday life when using residential respite care.

    Design and Methods

    Eighteen healthcare professionals with varying degrees of competence and from one residential respite care facility participated in four focus group interviews. Data were analysed through qualitative latent content analysis.

    Findings

    The findings revealed a broad, multifaceted view of participation and ways in which participation in everyday life is promoted by these professionals. Trustworthy relationships between professionals, spousal caregivers and clients were implicated. Promoting participation also necessitated that clients have access to meaningful activities. In addition, participation entailed an environment that supported various needs.

    Conclusion

    Promoting participation for older couples that are using respite care involves multifaceted perspectives that consider social–relational aspects including both the client and their spouse. Furthermore, attention is needed to the meaning a change of context between home and the respite care facility has on relationships, environments and activities in everyday life. Such an approach could benefit the couples’ shared everyday life situation and in a wider perspective, also influence their health and well‐being when ageing in place together.

  • 47.
    Riekkola, Jenni
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Rutberg, Stina
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Strategies of older couples to sustain togetherness2019In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 48, p. 60-66Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore how elderly couples, who are in need of social services in the community, act and reason over time regarding their everyday togetherness. Data were generated through repeated interviews and participant observations with three older couples. A narrative method was used for data generation and analysis. The findings present four parallel narratives illustrating how the couples, over time, strove to continue living their lives in togetherness despite the many challenges that had emerged. These narratives show the complexity and variety of strategies that the couples adopted to handle different situations of everyday life and the couples’ experiences and feelings connected to these situations. The strategies that the couples used resulted, for example, in performing more activities together in another way, using respite care and reorganizing their social interactions. The spousal caregiver had a leading role to manage day-to-day life and to initiate and perform the strategies. Simultaneously, an important reciprocity existed in their relationship that gave meaning to their efforts of sustaining togetherness. These findings give a deeper understanding of the complexity of their situation and of how meaning is created in their everyday life through enacted togetherness. The findings highlight the need for professionals within social services in the community to embrace a couple's whole situation, involving both partners. 

  • 48.
    Schultze, Christina
    et al.
    School of Health Professions, Institute of Occupational Therapy, Research and Development, Zurich University of Applied Sciences , ZHAW, Health, Winterhur.
    Kottorp, Anders
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Meichtry, André
    ZHAW, Health, Winterhur.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Page, Julie
    ZHAW, Health, Winterhur.
    Inter-Rater and Test–Retest Reliability of the German Pediatric Evaluation of Disability Inventory (PEDI-G)2015In: Physical & Occupational Therapy in Pediatrics, ISSN 0194-2638, E-ISSN 1541-3144, Vol. 35, no 3, p. 296-310Article in journal (Refereed)
    Abstract [en]

    Activities of daily living (ADL) of children are widely assessed with the Pediatric Evaluation Disability Inventory (PEDI). This study examined test–retest and inter-rater reliability of the German PEDI (PEDI-G). During the adaptation of the PEDI nine items were added. In total, 117 parents of 53 children without and 64 children with a diagnosed physical disability from Austria, Germany, and Switzerland participated. Reliability was examined by intraclass correlation coefficient (ICC), standard error of measurement (SEM) and smallest detectable difference (SDD) for the Functional Skill Scale with and without added items and the Caregiver Assistance Scale. Cohen`s Kappa was used to calculate the reliability of the Modification Scale. All ICC's for test–retest and inter-rater reliability were above 0.75, indicating good to very good reliability. The SDD varied from 0.83–5.58 across PEDI domains and scales. For the Modification Scale, Cohen's weighted kappa varied from 0.25 to 1.00 indicating sufficient reliability for some but not all items. Our findings indicate that the Functional Skill Scale and the Caregiver Assistance Scale of the PEDI-G are reliable scales that can be used to evaluate ADLs of children with and without physical disability.

  • 49.
    Schulze, Christina
    et al.
    School of Health Professions, Institute of Occupational Therapy, Research and Development, Zurich University of Applied Sciences.
    Page, Julia
    School of Health Professions, Institute of Occupational Therapy, Research and Development, Zurich University of Applied Sciences.
    Kottorp, Anders
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Adapting functional assessments for use in a new context: a balancing act2013In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 20, no 5, p. 336-342Article in journal (Refereed)
    Abstract [en]

    Objective: It is common practice today to process translations and adaptations of assessments through a committee review in order to render them suitable for use in a new context. The aim of this study was to elaborate issues that arise during the harmonization process in a committee review illustrated by the example of adapting the Pediatric Evaluation Disability Inventory (PEDI) for a German-speaking region of Europe to gain semantic, conceptual, and cultural equivalence of the translated version. Methods: The harmonization process was based on the subtle balancing act of (i) staying close to the original assessment, while adapting the translation to the new context, (ii) making decisions and reaching a consensus, (iii) the group dynamics versus planned course of the review committee. Results: The findings illustrate that achieving equivalence between the original and the target translated assessment was not always unproblematic and the risk of remaining misfitting items was found. The findings also highlight further influencing elements and discuss the challenges researchers face when planning to take on the task of translating and adapting an assessment. Conclusions: Some recommendations for conducting a committee review are formulated.

  • 50.
    Schulze, Christina
    et al.
    Zurich University of Applied Science.
    Page, Julie
    ZHAW, Health, Winterhur, Zurich University of Applied Science.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Kottorp, Anders
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, University of Illinois at Chicago.
    Cross-Cultural Validity of the German Version of the Pediatric Evulation of Disabiity Inventory (PEDI-G): a Rasch Model Application2016In: 1st CONTEC-ENOTHE Congress: National University of Ireland, Galway 15-19 June 2016, 2016, p. 12-Conference paper (Refereed)
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