Margareta Lilja

Experiences of participation in everyday occupations among persons aging with a tetraplegia

Abstract Purpose: 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 Aging with a SCI is a complex daily struggle in order to be able to continue acting and participating in everyday occupations, and thereby this gives implications for a lifelong support. This study provides knowledge that can guide clinicians in their work within this complex area of rehabilitation. Knowledge from this study can guide the work with policy recommendations for healthcare and social service systems.

Adapting functional assessments for use in a new context: A balancing act

Abstract 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.

Cross‐cultural validity of the German version of the Pediatric Evaluation of Disability Inventory (PEDI‐G)—a Rasch model application

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.

Care partner dyad strategies to support participation in community mobility

ABSTRACT 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.

Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts

Abstract 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.

Crossing a Line : A narrative of risk-taking by older women serving as caregivers

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.

Inter-rater and test-retest reliability of the German pediatric evaluation of disability inventory (PEDI-G)

ABSTRACT 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 ICCs 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, Cohens 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.

Occupational Therapists’ Interactions With Older Adult Caregivers: Negotiating Priorities and Expertise

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.