Healthcare professionals' perspective on how to promote older couples' participation in everyday life when using respite care.

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.

Leisure repertoire among persons with a spinal cord injury: interests, performance, and well-being.

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. Sex, 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 sex, 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.

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 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.

'Possibilities and challenges for older couples to continue ageing in place'.

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

'Finding the play' - exploring with occupational therapists practice possibilities in the context of Irish schoolyards.

BACKGROUND: Research has identified diverse constraints to the adoption of school-based occupational therapy approaches and a lack of attention to addressing the barriers to children's play opportunities. Critical contextualised research is advocated to inform practice possibilities. AIMS/OBJECTIVES: This inquiry aimed to explore with occupational therapists their existing practices in Irish schoolyards to generate practice possibilities concerned with play, as an issue of occupational justice. MATERIALS AND METHODS: Using the theory of practice architectures, six occupational therapists from diverse sites of practice participated in the first phase of a critical action research process using dialogical focus group and occupational mapping methods. RESULTS: Three themes were generated (1) Existing practices as situated (2) (Re)mattering play and practices as occupations and (3) Practice possibilities - 'Finding the play' between responsiveness and responsibilities. A further interrelated dimension was how the research methods provided mechanisms of raising consciousness. CONCLUSIONS, AND SIGNIFICANCE: Alongside constructing knowledges on existing practices in an Irish context, this inquiry contributes to understandings of practices as socially embedded generative processes of 'finding the play', highlighting ethical responsibilities to make visible inequities reproduced in habitual practices and engage in relationships of solidarity to (re)construct alternative shared practices.

Information and communication technology in home-based rehabilitation - a discussion of possibilities and challenges.

Background: Information and communication technology (ICT) has been proven to have effect in terms of providing alternative ways to deliver rehabilitation services. The intention with this paper is to serve as a foundation for discussions regarding the future development, design, and delivery of home-based rehabilitation, including ICT.Aim: To reflect on and discuss the possibilities and challenges of using ICT in home-based rehabilitation services.Method and material: We use experiences and results from various projects to reflect on and discuss possibilities and challenges related to the use of ICT in home-based rehabilitation.Findings and discussion: We exemplify how ICT present new possibilities that can increase the quality of the rehabilitation process and improve access to services. We reflect on some challenges in the use of ICT, related to non-user-friendly solutions, to the specific rehabilitation situation, and a lack of technical support. At an organisational level, readiness to use ICT can impact the extent to which new solutions are integrated into practice.Conclusion: We emphasise that ICT has the potential to develop and improve service delivery and contribute to increased quality and accessibility of home-based rehabilitation.

Balancing the good - a critical discourse analysis of home modification services.

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.

Encountering staff in the home: three older adults' experience during six months of home-based rehabilitation.

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 staff 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.

Longitudinal changes in everyday life after home modifications for people aging with disabilities.

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.

Strategies of older couples to sustain togetherness.

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.

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.

Impact of home modification services on ability in everyday life for people ageing with disabilities.

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.

The provision of stove timers to individuals with cognitive impairment.

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.

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

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.

Functional performance characteristics associated with postponing elementary school entry among children with Down syndrome.

OBJECTIVES: 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.

The influence of the environment on participation subsequent to rehabilitation as experienced by elderly people in Norway.

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.

Performance of activities of daily living in a sample of applicants for home modification services.

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.

Continuing to work after the onset of rheumatoid arthritis.

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.

"To Work Just Like Anyone Else"-A Narrative from a Man Aging with Spinal Cord Injury.

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.

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.