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Riekkola, J., Rutberg, S., Lilja, M. & Isaksson, G. (2019). Healthcare professionals’ perspective on how to promote older couples’ participation in everyday life when using respite care. Scandinavian Journal of Caring Sciences
Open this publication in new window or tab >>Healthcare professionals’ perspective on how to promote older couples’ participation in everyday life when using respite care
2019 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Epub ahead of print
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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
Keywords
caregivers, elder care, focus groups, older adults, participation, qualitative approaches, respite service
National Category
Occupational Therapy Physiotherapy
Research subject
Occupational therapy; Physiotherapy
Identifiers
urn:nbn:se:ltu:diva-72673 (URN)10.1111/scs.12640 (DOI)
Available from: 2019-01-24 Created: 2019-01-24 Last updated: 2019-04-16
Womack, J. L., Lilja, M., Dickie, V. & Isaksson, G. (2019). Occupational Therapists’ Interactions With Older Adult Caregivers: Negotiating Priorities and Expertise. OTJR (Thorofare, N.J.), 39(1), 48-55
Open this publication in new window or tab >>Occupational Therapists’ Interactions With Older Adult Caregivers: Negotiating Priorities and Expertise
2019 (English)In: OTJR (Thorofare, N.J.), ISSN 1539-4492, E-ISSN 1938-2383, Vol. 39, no 1, p. 48-55Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
caregivers, occupational therapy, older adults, grounded theory
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-70866 (URN)10.1177/1539449218799445 (DOI)000453436100007 ()30205761 (PubMedID)2-s2.0-85058532664 (Scopus ID)
Note

Validerad;2019;Nivå 2;2019-01-08 (johcin)

Available from: 2018-09-14 Created: 2018-09-14 Last updated: 2019-04-17Bibliographically approved
Riekkola Carabante, J., Rutberg, S., Lilja, M. & Isaksson, G. (2019). Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts. Scandinavian Journal of Occupational Therapy, 25(6), 457-465
Open this publication in new window or tab >>Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts
2019 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 25, no 6, p. 457-465Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Taylor & Francis, 2019
Keywords
Aged, grounded theory, health, occupational therapy, rehabilitation, respite care
National Category
Occupational Therapy Physiotherapy
Research subject
Occupational therapy; Physiotherapy
Identifiers
urn:nbn:se:ltu:diva-63988 (URN)10.1080/11038128.2017.1337810 (DOI)000458235400006 ()28602117 (PubMedID)2-s2.0-85020672590 (Scopus ID)
Note

Validerad;2019;Nivå 2;2019-03-11 (johcin)

Available from: 2017-06-14 Created: 2017-06-14 Last updated: 2019-04-16Bibliographically approved
Riekkola, J., Rutberg, S., Lilja, M. & Isaksson, G. (2019). Strategies of older couples to sustain togetherness. Journal of Aging Studies, 48, 60-66
Open this publication in new window or tab >>Strategies of older couples to sustain togetherness
2019 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 48, p. 60-66Article in journal (Refereed) Published
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. 

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Narrative, Older adults, Participation, Relationships, Respite care, Togetherness
National Category
Occupational Therapy Physiotherapy
Research subject
Occupational therapy; Physiotherapy
Identifiers
urn:nbn:se:ltu:diva-72772 (URN)10.1016/j.jaging.2019.01.005 (DOI)30832931 (PubMedID)2-s2.0-85060436837 (Scopus ID)
Note

Validerad;2019;Nivå 2;2019-02-06 (svasva)

Available from: 2019-02-06 Created: 2019-02-06 Last updated: 2019-04-16Bibliographically approved
Synnes, K., Lilja, M., Nyman, A., Espinilla, M., Cleland, I., Sanchez Comas, A. G., . . . Nugent, C. (2018). H2Al - The Human Health and Activity Laboratory. In: MDPI (Ed.), 12th International Conference on Ubiquitous Computing and Ambient ‪Intelligence (UCAmI 2018), Punta Cana, Dominican Republic, 4-7 December, 2018.: . Paper presented at International Conference on Ubiquitous Computing and Ambient ‪Intelligence. MDPI, 2, Article ID 1241.
Open this publication in new window or tab >>H2Al - The Human Health and Activity Laboratory
Show others...
2018 (English)In: 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, Published 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.

Place, publisher, year, edition, pages
MDPI, 2018
National Category
Computer and Information Sciences
Research subject
Pervasive Mobile Computing
Identifiers
urn:nbn:se:ltu:diva-72988 (URN)10.3390/proceedings2191241 (DOI)
Conference
International Conference on Ubiquitous Computing and Ambient ‪Intelligence
Projects
REMIND
Funder
The Kempe Foundations
Available from: 2019-02-21 Created: 2019-02-21 Last updated: 2019-02-21
Schulze, C., Page, J. P., Lilja, M. & Kottorp, A. (2017). Cross-cultural validity of the German version of the Pediatric Evaluation of Disability Inventory (PEDI-G): a Rasch model application. Child Care Health and Development, 43(1), 48-58
Open this publication in new window or tab >>Cross-cultural validity of the German version of the Pediatric Evaluation of Disability Inventory (PEDI-G): a Rasch model application
2017 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 43, no 1, p. 48-58Article in journal (Refereed) Published
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.  

Place, publisher, year, edition, pages
John Wiley & Sons, 2017
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-59565 (URN)10.1111/cch.12401 (DOI)000396460600005 ()27592707 (PubMedID)2-s2.0-84992388235 (Scopus ID)
Note

Validerad; 2017; Nivå 2; 2017-02-20 (rokbeg)

Available from: 2016-10-07 Created: 2016-10-07 Last updated: 2018-09-14Bibliographically approved
Womack, J. L., Lilja, M. & Isaksson, G. (2017). Crossing a Line: A narrative of risk-taking by older women serving as caregivers. Journal of Aging Studies, 41, 60-66
Open this publication in new window or tab >>Crossing a Line: A narrative of risk-taking by older women serving as caregivers
2017 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 41, p. 60-66Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Elsevier, 2017
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-63134 (URN)10.1016/j.jaging.2017.04.002 (DOI)000404490400008 ()28610756 (PubMedID)2-s2.0-85018485234 (Scopus ID)
Note

Validerad; 2017; Nivå 2; 2017-04-24 (andbra)

Available from: 2017-04-24 Created: 2017-04-24 Last updated: 2018-07-10Bibliographically approved
Lilja, M. & Josephsson, S. (2017). Participation from the perspective of the user: From subjective experiences to lived experiences. In: Participation in health and welfare services: Professional concepts and lived experience (pp. 33-40). Taylor & Francis
Open this publication in new window or tab >>Participation from the perspective of the user: From subjective experiences to lived experiences
2017 (English)In: Participation in health and welfare services: Professional concepts and lived experience, Taylor & Francis, 2017, p. 33-40Chapter in book (Refereed)
Place, publisher, year, edition, pages
Taylor & Francis, 2017
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-65098 (URN)10.4324/9781315628554 (DOI)2-s2.0-85026687059 (Scopus ID)9781315628554 (ISBN)9781138644854 (ISBN)
Available from: 2017-08-15 Created: 2017-08-15 Last updated: 2017-11-24Bibliographically approved
Lundström, U., Wahman, K., Seiger, Å., Grey, D., Isaksson, G. & Lilja, M. (2017). Participation in activities and secondary health complications among persons aging with traumatic spinal cord injury. Spinal Cord, 55(4), 367-372
Open this publication in new window or tab >>Participation in activities and secondary health complications among persons aging with traumatic spinal cord injury
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2017 (English)In: Spinal Cord, ISSN 1362-4393, E-ISSN 1476-5624, Vol. 55, no 4, p. 367-372Article in journal (Refereed) Published
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

Place, publisher, year, edition, pages
Nature Publishing Group, 2017
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-60564 (URN)10.1038/sc.2016.153 (DOI)000399431800007 ()27845357 (PubMedID)2-s2.0-84995513649 (Scopus ID)
Note

Validerad; 2017; Nivå 2; 2017-04-12 (andbra)

Available from: 2016-11-20 Created: 2016-11-20 Last updated: 2018-11-19Bibliographically approved
Lundström, U., Lilja, M. & Isaksson, G. (2017). "To Work Just Like Anyone Else": a narrative from a man aging with spinal cord injury. Healthcare, 5(4), Article ID 87.
Open this publication in new window or tab >>"To Work Just Like Anyone Else": a narrative from a man aging with spinal cord injury
2017 (English)In: Healthcare, E-ISSN 2227-9032, Vol. 5, no 4, article id 87Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
MDPI, 2017
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-66568 (URN)10.3390/healthcare5040087 (DOI)29120355 (PubMedID)
Note

Validerad;2017;Nivå 2;2017-11-13 (svasva)

Available from: 2017-11-13 Created: 2017-11-13 Last updated: 2017-12-08Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-1026-5419

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