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  • 1.
    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.

  • 2.
    Womack, Jennifer L.
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation. The University of North Carolina at Chapel Hill, USA.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Dickie, Virginia
    The University of North Carolina at Chapel Hill, USA.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Occupational Therapists’ Interactions With Older Adult Caregivers: Negotiating Priorities and Expertise2019In: OTJR (Thorofare, N.J.), ISSN 1539-4492, E-ISSN 1938-2383, Vol. 39, no 1, p. 48-55Article in journal (Refereed)
    Abstract [en]

    Although numerous studies have examined provider–caregiver interactions and their influence on care outcomes, few represent the perspective of the provider or specifically consider occupational therapy practitioners. The aim of this article is to explore the perspectives of occupational therapists regarding interactions with older adult caregivers in geriatric practice settings. The study was conducted using a constructivist grounded theory approach based on data obtained from repeated focus group sessions and subsequent individual reflections. Occupational therapy practitioners interact with older adult caregivers in ways that reflect negotiations about who holds expertise and whose priorities are most relevant in care situations. These interactions are influenced by health care contexts that foreground the needs of the care recipient. A deeper understanding of caregiving as an occupation via a transactional perspective may serve to illuminate complex care situations and optimize therapist–caregiver interactions.

  • 3.
    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.

  • 4.
    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. 

  • 5.
    Synnes, Kåre
    et al.
    Luleå University of Technology, Department of Computer Science, Electrical and Space Engineering, Computer Science.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Nyman, Anneli
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Espinilla, Macarena
    Cleland, Ian
    Sanchez Comas, Andres Gabriel
    Comas Gonzalez, Zhoe Vanessa
    Hallberg, Josef
    Luleå University of Technology, Department of Computer Science, Electrical and Space Engineering, Signals and Systems. Luleå University of Technology, Department of Computer Science, Electrical and Space Engineering, Computer Science.
    Karvonen, Niklas
    Luleå University of Technology, Department of Computer Science, Electrical and Space Engineering, Computer Science.
    Ourique de Morais, Wagner
    Cruciani, Federico
    Nugent, Chris
    H2Al - The Human Health and Activity Laboratory2018In: 12th International Conference on Ubiquitous Computing and Ambient ‪Intelligence (UCAmI 2018), Punta Cana, Dominican Republic, 4-7 December, 2018. / [ed] MDPI, MDPI, 2018, Vol. 2, article id 1241Conference paper (Refereed)
    Abstract [en]

    The Human Health and Activity Laboratory (H2Al) is a new research facility at Luleå University of Technology implemented during 2018 as a smart home environment in an educational training apartment for nurses and therapists at the Luleå campus. This paper presents the design and implementation of the lab together with a discussion on potential impact. The aim is to identify and overcome economical, technical and social barriers to achieve an envisioned good and equal health and welfare within and from home environments. The lab is equipped with multiple sensor and actuator systems in the environment, worn by persons and based on digital information. The systems will allow for advanced capture, filtering, analysis and visualization of research data such as A/V, EEG, ECG, EMG, GSR, respiration and location while being able to detect falls, sleep apnea and other critical health and wellbeing issues. The resulting studies will be aimed towards supporting and equipping future home environments and care facilities, spanning from temporary care to primary care at hospitals, with technologies for activity and critical health and wellness issue detection. The work will be conducted at an International level and within a European context, based on a collaboration with other smart labs, such that experiments can be replicated at multiple sites. This paper presents some initial lessons learnt including design, setup and configuration for comparison of sensor placements and configurations as well as analytical methods.

  • 6.
    Schulze, Christina
    et al.
    Zurich University of Applied Science, School of Health Professions, Institute of Occupational Therapy, Research and Development, Winterthur, Switzerland.
    Page, Julie P.
    Zurich University of Applied Science, School of Health Professions, Institute of Occupational Therapy, Research and Development, Winterthur, Switzerland.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.
    Kottorp, Anders
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Stockholm.
    Cross-cultural validity of the German version of the Pediatric Evaluation of Disability Inventory (PEDI-G): a Rasch model application2017In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 43, no 1, p. 48-58Article in journal (Refereed)
    Abstract [en]

    AIM:

    The aim of this study was to evaluate the cross-cultural validity of the German version of the Pediatric Evaluation of Disability Inventory (PEDI-G) when used in Austria, Germany and Switzerland.

    METHOD:

    A total of 118 girls and 144 boys participated in this study; 198 of the children (75.6%) had a developmental disability and 64 (24.4%) were without a known disability. The mean age was four years (range 11 months to 10 years and six months, SD 1.91). Item goodness of fit, differential item functioning (DIF) and differential test functioning (DTF) were evaluated by use of a Rasch model.

    RESULTS:

    Twenty-four (11.6%) out of 206 items of the Functional Skills Scale and one (5%) out of 20 items of the Caregiver Assistance Scale demonstrated misfit according to the Rasch model. Thirty-four (16.5%) out of 206 items of the Functional Skills Scale and no item from the Caregiver Assistance Scale demonstrated DIF. Almost half (46%) of the items demonstrating misfit also demonstrated DIF, indicating an association between them. The DIF by country only demonstrated a minimal impact on the person measures of the PEDI-G.

    INTERPRETATION:

    Even though some items did not meet the statistical and clinical criteria set, the PEDI-G can be used, on a preliminary basis as a valid tool to measure activities of daily living of children with and without a disability in these countries. Further larger studies are needed to evaluate more psychometric item properties of the PEDI-G in relation to context.  

  • 7.
    Womack, Jennifer L.
    et al.
    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.
    Crossing a Line: A narrative of risk-taking by older women serving as caregivers2017In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 41, p. 60-66Article in journal (Refereed)
    Abstract [en]

    Background

    Caregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers.

    Aim

    To explore the everyday experiences of older adults serving as primary informal caregivers to significant others.

    Methods

    A process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative.

    Results

    These caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative.

    Conclusion and significance

    The everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.

  • 8.
    Lilja, Margareta
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    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)
  • 9.
    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.
    Seiger, Å.
    Division of Neurodegeneration, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Grey, DB
    Disability and Community Participation Research Office (DACPRO), Department of Neurology, Washington University School of Medicine, St Louis, MO.
    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

  • 10.
    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.

  • 11.
    Womack, Jennifer L.
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Isaksson, Gunilla
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Care partner dyad strategies to support participation in community mobility2016In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 23, no 3, p. 220-229Article in journal (Refereed)
    Abstract [en]

    Background Factors supporting continued community mobility for older adults warrant attention due to the relationship between mobility, health, and social participation. Although community mobility is typically considered from the perspective of individual functional abilities, care partnerships represent a situation in which maintaining community mobility has implications for the well-being of all members. Aim The aim of this research was to explore and describe strategies used by older adult care partner dyads to support and maintain participation in community mobility. Methods Ethnographic case studies of three care partner dyads were conducted using in-depth interviews, participant observation, photographs, and reciprocal data analysis. An inductive, constant comparative data analysis resulted in thematic descriptions of strategies employed by the care partner dyads. Results Three strategies were identified in collaboration with care partners: (i) Acting in accordance with the values of the relationship, (ii) Finding and using available assistive technology and (iii) Relying on social networks. Conclusion and significance Strategies identified by participants were more relational than procedural in nature, indicating the need for occupational therapists working with care partner dyads to consider historical routines, social connectedness, and needs of the care partnership in addition to functional abilities of the care recipient when addressing community mobility

  • 12.
    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)
  • 13.
    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)
  • 14.
    Carabante, Jenni Riekkola
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Rutberg, Stina
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    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.
    Spousal caregivers' experiences of participation in everyday life when using respite care2016Conference paper (Refereed)
  • 15.
    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

  • 16.
    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.

  • 17.
    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 Rehab.
    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)
  • 18.
    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.

  • 19.
    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.

  • 20.
    Schultze, 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 Rehab.
    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.

  • 21.
    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)
  • 22. 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)
  • 23.
    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.

  • 24.
    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

  • 25.
    Vik, Kjersti
    et al.
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Nygård, Louise
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Lilja, Margareta
    Encountering staff in the home: Three older adults' experience during six months of home-based rehabilitation2009In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 8, p. 619-629Article in journal (Refereed)
    Abstract [en]

    Purpose. The purpose of the present study was to explore and describe how older adults who received home-based rehabilitation perceived the staff during a period of 6 months when they received rehabilitation. Specifically, the study focused on how the participants collaborated with and made use of the services from the staff. Method. In this case-oriented study, three older adults were interviewed continuously during the 6-month period they received home-based rehabilitation. The interviews were analysed continuously using a grounded theory approach. Results. Five different modes of perceiving the staff were identified among the participants: as small talk persons, as discussions partners, as instructors and advisors, as teachers and as persons who carry out tasks efficiently. The three conditions that most came to influence the way the participants perceived collaborated with the staff were as follows: 'experience and encounters with the staff', 'expectations for the future daily life', and 'the participants' needs and tasks related to their disability'. Conclusions. To achieve collaboration and user involvement, the staffs have to encounter each client differently in accordance with the various tasks that must be carried out during rehabilitation. Our findings indicate that this is particularly important for older adults during home-based rehabilitation, since older adults often have changing needs because of comorbidity

  • 26.
    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.

  • 27.
    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. ©

  • 28.
    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.

  • 29.
    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.

  • 30.
    Nilsson, Ines
    et al.
    Luleå tekniska universitet.
    Fitinghoff, Hélène
    Department of Neurotec, Division of Occupational Therapy, Karolinska Institutet, Huddinge.
    Lilja, Margareta
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Continuing to work after the onset of rheumatoid arthritis2007In: Work: A journal of Prevention, Assesment 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

  • 31.
    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.

  • 32.
    Vik, Kjersti
    et al.
    Division of Occupational Therapy, Karolinska Institutet.
    Nygård, Louise
    Division of Occupational Therapy, Karolinska Institutet.
    Lilja, Margareta
    Perceived environmental influence on participation among older adults after home-based rehabilitation2007In: Physical & Occupational Therapy in Geriatrics, ISSN 0270-3181, E-ISSN 1541-3152, Vol. 25, no 4, p. 1-20Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to identify how older adults perceive environmental factors to have an influence on their participation after receiving home-based rehabilitation services. The respondents were older adults of more than 65 years of age who had received home-based rehabilitation. The questionnaire Measurement of the Quality of the Environment (MQE) was used to gather the data. The results showed that, in this population of older adults, many environmental factors were perceived as do not apply or to lack influence. Factors that were perceived as facilitators for the respondent's participation came under the categories social network, social and healthcare services and commercial services, and physical environments such as the presence of technical aids within the respondents' homes. Few environmental factors were identified as barriers to participation

  • 33.
    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.

  • 34.
    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.

  • 35.
    Vik, Kjersti
    et al.
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    Lilja, Margareta
    Nygård, Louise
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institute.
    The influence of the environment on participation subsequent to rehabilitation as experienced by elderly people in Norway2007In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 14, no 2, p. 86-95Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to illuminate how the environment may influence participation among elderly people who have undergone community-based rehabilitation in Norway, after an acute illness or accident. Fourteen persons over 65 years of age were selected with the specific intention of gaining a variety of ages, both genders, and people living in different kinds of housing. Three focus groups were established and repeated interviews were held with each group. A constant comparative analysis was used to analyse the data. The main finding was that the participants experienced pressure from their environment to concentrate on performing the most necessary daily activities rather than on participation. Three main encounters with environments seemed to be important for this: encountering people and society, encountering private and formal assistance, and encountering occupation. The support that the participants received from family and friends was more important for their participation than having accessible physical environments. The findings suggest that occupational therapists must consider themselves to be part of a societal environment that can hinder participation.

  • 36.
    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.

  • 37. 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

  • 38. 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. 3, p. 130-135Article in journal (Refereed)
  • 39.
    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)
  • 40.
    Lilja, Margareta
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    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)
  • 41.
    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)
  • 42. 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)
  • 43. 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

  • 44.
    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. 311-316, article id 6Article 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.

  • 45. Lilja, Margareta
    Äldres rehabiliteringsbehov i hemmiljö2001Report (Other academic)
  • 46. 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.

  • 47. 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.

  • 48. 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.

  • 49.
    Söderback, Ingrid
    et al.
    Department of Social Care and Rehabilitation, Stockholm University College of Health Sciences.
    Lilja, Margareta
    A study of activity in the home environment among individuals with disability following a stroke1995In: NeuroRehabilitation (Reading, MA), ISSN 1053-8135, E-ISSN 1878-6448, Vol. 5, no 4, p. 347-357Article in journal (Refereed)
    Abstract [en]

    An ethnographic approach (Fetterman DM. Ethnography Step by Step. Applied Social Research Methods Series, Vol. 17. London, New Delhi, SAGA Publication, 1990) with thematic interviews, participatory observations, the 'activity log' (Yerxa EJ, Baum S. Engagement in daily occupations and life satisfaction among people with spinal cord injuries. Occup Ther J Res 1986;(6)4;318-326), and the 'satisfaction with performance scaled questionnaire' (Yerxa EJ, Burnett-Beaulieu SE, Stocking S, Azen SP. Development of the satisfaction with performance scaled question naire (SPSQ). Am J Occup Ther 1988;42:215-221) were used to investigate, in their homes, the performance of occupation/activity in 15 stroke victims dependent in activities of daily living. The data were categorised according to Spradley (Participants Observation. USA, Holt, Rinehart and Winston, 1980). The study describes the activities performed by the individuals themselves, activities done for them, patterns of activity over time and the individuals' satisfaction with, and feelings about, each activity

  • 50.
    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

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