Participation in daily activities and social roles of older adults with visual impairment

Purpose. (1) to document participation in daily activities and social roles of older adults seeking services for visual impairment (VI) and compare it with that of the older population without VI or other disabilities, and (2) to explore correlates of their participation.

Methods. The 64 participants (46 women) had an average age of 79.3 years (SD = 5.9 years) and presented various types of VI. Participants were interviewed at home to collect information regarding their visual function (National Eye Institute Visual Function Questionnaire-25), sociodemographic and clinical characteristics, including depressive symptoms (Geriatric Depression Scale), and participation (Assessment of Life Habits/LIFE-H). Each participant was matched with another person without disabilities randomly recruited from the community. Results for the two populations on the Life-H participation domains were compared using t-tests. In the group with VI, general information (independent variables) was examined in relation to participation main scores (dependent variables), followed by multiple linear regression analyses.

Results. Participation in daily activities and social roles of participants with VI (mean ± SD (/9) = 6.8 ± 1.0 and 5.6 ± 1.6, respectively) was significantly lower than that of participants without VI (8.1 ± 0.4 and 8.3 ± 0.4) (p < 0.0001). Depressive symptoms and perceived quality of distance vision were the strongest correlates and together explained more than 65% of the variance in the participation scores of the subjects with VI.

Conclusions. This study demonstrates the participation restrictions associated with VI and underlines the importance of psychological aspects in participation.     

Reliability of the LIFE-H satisfaction scale and relationship between participation and satisfaction of older adults with disabilities

Purpose.?To (1) document the test–retest reliability of the Assessment of Life Habits (LIFE-H 3.1) in measuring the satisfaction of older adults with disabilities regarding their level of participation and (2) explore the relationships between level of participation and satisfaction with the level of participation achieved.

Methods.?Thirty older adults having functional disabilities were interviewed twice using the LIFE-H. This questionnaire assesses the (1) participation in daily activities and social roles (life domains), and (2) satisfaction with this participation.

Results.?The test–retest intraclass correlation coefficients (ICC) of the satisfaction total score and its two subscores revealed high reliability (ICCs ≥ 0.84). Moderate to excellent ICCs were also obtained for the life domains (ICCs = 0.65–0.88). Satisfaction was positively associated with participation for the daily activities subscore and LIFE-H total score (p < 0.05) but not the social roles subscore. Half of the life domains showed significant correlations between participation and satisfaction scores (p < 0.01).

Conclusion.?The results support the reliability of the LIFE-H satisfaction scale in older adults having functional disabilities. Also, as satisfaction is only partly related to the level of participation, the study emphasizes the relevance of considering both participation and satisfaction of older adults with disabilities when evaluating their needs.     

The influence of participation on health-related quality of life in stroke patients

Purpose.?Limitations in participation may have independent influences on health-related quality of life (HRQOL) at early and late phases of stroke recovery.

Methods.?Consecutive stroke patients were interviewed at months 3 and 12 after stroke for modified Barthel Index (MBI), geriatric depression scale (GDS) and WHO QOL questionnaire (abbreviated Hong Kong version). London handicap scale (LHS) was used to measure limitations in participation. The influence of the six LHS domains on the four HRQOL domains, adjusted for MBI and GDS was analysed by structural equation modelling with a two-component analysis.

Results.?Complete data were collected in 500 and 433 subjects at months 3 and 12, respectively. On multivariate analysis, after adjustment for MBI and GDS, the independence and social integration domains of LHS had significant influence on physical and social HRQOL, respectively, at both 3 and 12 months post-stroke. The occupation domain was a significant factor of physical and environmental HRQOL at month 12, but not at month 3. Economic sufficiency had more influence on HRQOL at month 3 than at month 12. The mobility and orientation domains had no significant negative influence on HRQOL.

Conclusions.?In stroke patients, participation had significant independent influences on HRQOL.     

Mobility-related participation and user satisfaction: Construct validity in the context of powered wheelchair use

Purpose.?The aim of this study was to investigate the constructs of mobility-related participation and user satisfaction, two important outcome dimensions within praxis and research on mobility device interventions.

Method.?To fulfill this aim, validity and reliability of a 12-item scale on mobility-related participation and a 10-item scale on user satisfaction were examined in the context of older people's powered wheelchair use (n?=?111). Rasch analysis and correlation analysis were applied.

Results.?Construct validity of both scales was confirmed. The reliability of the user satisfaction scale was good, while the mobility-related participation scale was not optimal in discriminating between persons with a high degree of mobility-related participation. It was demonstrated that mobility-related participation and user satisfaction are separate, not related constructs.

Conclusions.?It can be concluded that the investigated mobility-related participation and user satisfaction constructs appear to be valid. Since the two constructs are not related and both yield important information, both dimensions should be evaluated in outcomes research and praxis targeting powered wheelchair interventions. Reliability problems of the mobility-related participation scale indicate the complexity of this construct. The results have been instrumental in the development of a new scale for measuring mobility-related participation ‘The NOMO 1.0’.     

Understanding physical factors associated with participation in community ambulation following stroke

Purpose.?This study examined the association between impaired physical function and participation in community ambulation following stroke. We hypothesised that participation would be significantly less following stroke, and that physical impairments would be associated with participation.

Method.?Using a case–control design 30 survivors of stroke aged 45 and older and 30 controls provided health status information and a self-report of participation in community ambulation (number of trips and walking-related activities (WRA) reported prospectively over a 12-day period). The association of physical impairments (strength, range of motion, sensation, muscle tone, vision, and activity limitations (gait speed and performance on complex walking tasks)) with level of participation was analysed using negative binomial regression and goodness of fit.

Results.?Participants included 30 individuals with and 30 without stroke, average age 68 years, majority were Caucasian women. Average time since stroke was 40 months. Participation in survivors of stroke was characterised by fewer trips and WRA and lower satisfaction (p < 0.001). Usual gait speed, balance, muscle strength and muscle length were impaired (p < 0.001) in stroke vs. controls, and associated with number of trips and WRA (p < 0.05). However, these factors explained less than very little of the variance in participation.

Conclusions.?While individual factors were associated with level of participation, results failed to accurately predict participation in community ambulation following stroke. Other factors, such as depression, cognition and self-efficacy may be stronger determinants of participation.     

Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Objective.?To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods.?Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Results.?Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.

Conclusions.?Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.     

The social experience of aging with a chronic illness: Perspectives of older adults with multiple sclerosis

Purpose.?The purpose of this study was to explore the social experiences of older adults with multiple sclerosis (MS) in order to recognize the changes in social experience and social needs that may occur with aging with a chronic illness.

Method.?Analysis of qualitative data from an exploratory study utilizing a phenomenological approach with 27 older adults with MS, aged 55 – 81.

Results.?In-depth interviews revealed that the social experience was influenced by groups of factors including the person's social needs, experience of MS, values and expectations, characteristics of the social support system, the response of the support providers, and the accessibility of the social environment. The participants discussed concerns about the future adequacy of support. A process of negotiation was also described and was seen as an opportunity to change the social experience and social support received.

Conclusion.?This study provides an insider's view of the social changes that older adults living with MS experience. This study also identifies barriers to the acquisition of support and addresses the importance of appropriately responding to the changing needs of this population.     

Vision self-management for older adults: A pilot study

Purpose.?The aim of this study was to pilot test the vision self-management programme (VSM) a newly developed, 8-week self-management intervention. The programme is a structured, repeatable and theoretically derived programme for older adults with age-related vision loss (ARVL).

Method.?A pre-and post-test design was used, and involved 12 older adults with ARVL. The activity card sort, a measure of participation in life situations, was the primary outcome measure. Secondary outcome measures examining general health and vision specific domains were also used.

Results.?Participants reported a statistically significant increase in participation in life situations immediately following the VSM programme. However, whilst an increase in such participation was still present at 12-week follow-up, this was no longer statistically significant. In addition, the participants demonstrated statistically significant gains in both general health and vision specific domains. Although these findings are exploratory they suggest that the VSM may have both short and longer term benefits for older adults living with ARVL.

Conclusions.?Overall findings indicate that the participation in the self-management programme resulted in improved participation and health outcomes and support the need for further study using more rigorous designs.     

Can personal and environmental factors explain participation of older adults?

Purpose. This study explores the extent to which personal and environmental factors explain participation in daily activities and social roles of older adults with chronic conditions.

Method. Two hundred older adults with chronic conditions completed the following assessments: Assessment of Life Habits (participation); Interpersonal Support Evaluation List (social support); Activities Specific Balance Confidence Scale (balance confidence); Timed Up and Go Test (mobility capacity); and Centre for Epidemiological Studies Depression Scale (depression symptomatology).

Results. Mobility and balance confidence explained 30% of the level of participation in daily activities and 24% of participation in social roles, whereas social support and depression did not contribute to the explanation of participation. When explaining participation in daily activities, sex had a significant contribution to the model.

Conclusions. Participation accomplishment is explained by personal factors related to an elder's physical and mental ability while sex differences had an important role for explaining accomplishment of daily activities. Additional aspects of participation, environmental barriers, and level of disability, are key factors identified for further inquiry.     

Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning

Purpose.?Content comparison of health-related quality of life ((HRQOL)) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version ((ICF-CY)) as a standard by which to compare the content of all cerebral palsy ((CP)) disease-specific HRQOL measures.

Methods.?MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa ((κ)) statistic.

Results.?Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent ((n == 510)) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 ((95%% CI: 0.75–0.77)). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components.

Conclusions.?The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.     

Is walking endurance associated with activity and participation late after stroke??

Purpose.?After stroke, impaired walking ability may affect activity and participation. The aim was to investigate whether self-reported activity and participation were associated with walking endurance late after stroke.

Method.?A non-randomised sample of 31 persons with a mean age of 59.7 years and time since stroke of 7–10 years was studied. Walking endurance was measured by the 6-minute walk test (6MWT). Self-reported activity and participation were measured by the Physical Activity Scale for the Elderly and the Stroke Impact Scale. Relationships were analysed with linear regression.

Results.?A regression model including activities of daily living and 6MWT explained 44%%, mobility and 6MWT explained 25%% and a model including physical activity level and 6MWT explained 21%% of the variation in activity. Regarding participation, the explanatory level of the model of participation and 6MWT was 30%%.

Conclusions.?Walking distance several years after stroke was partly associated with self-reported difficulties in activity and participation.     

A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: The acquisition of adult social roles

Purpose.?To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the International Classification of Functioning, Disability, and Health to test this hypothesis.

Method.?We used a structured questionnaire to obtain information on the consequences of childhood impairment in young adulthood and to examine the relationship between impairment and acquisition of adult social roles. The sample (n = 635) came from the Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults, a population-based cohort of young adults aged 21 – 25 years identified at age 10 with childhood impairment.

Results.?The results suggest that: (i) attaining adult social roles varies by impairment type and severity, (ii) experiencing activity limitations partially mediate the relationship between impairment and adult social roles, and (iii) attending postsecondary education increases the likelihood of attaining markers of adulthood.

Conclusions.?Intervention to reduce activity limitations and to develop strategies to increase attendance in postsecondary education may increase the likelihood for the acquisition of adult social roles among young adults with childhood impairment.     

Community services for young adults with motor disabilities – A paradox

Purpose.?To understand the contribution of educational, employment, transportation, and assured income service programs to the successful transition to adulthood of young persons with motor disabilities.

Method.?Personal interviews of 76 young adults ages 20 to 30 years with a diagnosis of cerebral palsy (n?=?54) or spina bifida (n?=?22) varying in functional mobility. Content analysis of transcribed interviews was conducted and themes identified.

Results.?‘Paradox of Services' emerged as a dominant theme across all four service sectors. Services designed to encourage independence and full participation for the young adults in their communities often restricted their independence and employment options in young adulthood.

Conclusions.?Services need to be more individualized and flexible to accommodate the environmental and personal needs of the young adults. Rehabilitation professionals have important roles at both an individual family level and the systems level to ensure the ‘best fit’ between persons with motor disabilities and the services available to them. Contemporary views of disability support rehabilitation intervention targeting both individual and environmental factors.     

Prediction of long-term occupational performance outcomes for adults after moderate to severe traumatic brain injury

Purpose.?To examine predictors of long-term occupational performance outcomes for adults after moderate to severe traumatic brain injury (TBI).

Method.?This study involved analysis of data from a retrospective cohort of adults (N = 306) with moderate to severe TBI discharged from a Pennsylvania rehabilitation treatment facility. Extensive pre-injury sociodemographic, injury-severity, post-injury personal (cognitive, physical, affective), post-injury environmental (social, institutional, physical), and post-injury occupational performance (participation in self-care, productivity, leisure activities) data were gathered from hospital records and using in-person interviews. Interviews occurred at a mean time of 14 (range, 7–24) years post-injury. Hierarchical multiple regression analysis was used to investigate determinants of long-term occupational performance outcomes.

Results.?Pre-injury behavioural problems, male gender, post-injury cognitive and physical deficits, and lack of access to transportation were significant independent predictors of worse occupational performance outcomes.

Conclusions.?The study supports the use of a comprehensive model for long-term outcomes after TBI where pre-injury characteristics and post-injury cognitive and physical characteristics account for the greatest proportion of explained variance.     

Evaluation of manual wheelchairs by individuals with spinal cord injuries

Purpose.?The aim of this study was to investigate how adults with spinal cord injury assess their satisfaction regarding various aspects and use of their manual wheelchair.

Method.?The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) together with seven additional questions was sent to 205 adults with SCI.

Results.?One hundred and twenty-four responses were available. The QUEST 2.0 showed a high level of satisfaction with manual wheelchair properties. However, the respondents were less satisfied with the services offered. Ease of use and comfort were identified as most important. Eighty-nine percent of the respondents rated their level of satisfaction as ‘quite satisfied’ or ‘very satisfied’ in ease of using a manual wheelchair compared with 68% of the respondents that were ‘quite satisfied’ or ‘very satisfied’ with the level of comfort. A greater satisfaction of ease in propulsion indoors compared with sitting comfort in various activities was found.

Conclusions.?A discrepancy was shown between users not being as satisfied with comfort in sitting in various activities as opposed to satisfaction with propulsion. This indicates the need for increased knowledge and developments concerning individual solutions, incorporating comfort as well as ease of use of a manual wheelchair.     

Factors associated with quality of life and caregiver strain amongst frail older adults referred to a community rehabilitation service: implications for service delivery

Purpose.?To identify factors contributing to reduced quality of life and increased caregiver strain in an older population referred to a community rehabilitation team and to recommend service delivery models.

Methods.?Analytical cross-sectional study arising from baseline assessments from 107 subjects drawn from a randomised controlled trial of community rehabilitation service delivery models.

Setting.?A community rehabilitation team based in Brisbane, Queensland, Australia.

Measures.?Primary outcome variables include quality of life (EQ-5D & VAS) and Carer Strain Index. Predictor variables include participation in functional activities, history of falls, number of medications, number of co-morbidities, depression, environmental hazards, physical function and nutrition. Association between variables assessed using linear regression.

Results.?Major factors contributing to reduced quality of life were having reduced participation in daily activities, depression, and having poor vision. Having poor nutrition and no longer driving also contributed to poor quality of life. The major factor contributing to increased caregiver strain was reduced participation in daily activities by the older person.

Conclusions.?Community rehabilitation services working with older populations must adopt models of care that screen for and address a wide range of factors that contribute to poor quality of life and caregiver strain.     

Using the manual ability classification system in young adults with cerebral palsy and normal intelligence

Purpose.?The study aimed to establish whether the manual ability classification system (MACS), a valid classification system for manual ability in children with cerebral palsy (CP), is applicable in young adults with CP and normal intelligence.

Subjects.?The participants (n?=?83) were young adults with CP and normal intelligence and had a mean age of 19.9 years.

Method.?In this study, inter observer reliability of the MACS was determined. We investigated relationships between the MACS level and patient characteristics (such as the gross motor function classification system (GMFCS) level, limb distribution of the spastic paresis and educational level) and with functional activities of the upper extremity (assessed with the Melbourne assessment, the Abilhand questionnaire and the domain self-care of the functional independence measure (FIM)). Furthermore, with a linear regression analysis it was determined whether the MACS is a significant determinant of activity limitations and participation restrictions.

Results.?The reliability was good (intraclass correlation coefficient 0.83). The Spearman correlation coefficients with GMFCS level, limb distribution of the spastic paresis and educational level were 0.53, 0.46, and 0.26, respectively. MACS level correlated moderately with outcome measures of functional activities (correlations ranging from??0.38 to??0.55). MACS level is, in addition to the GMFCS level, an important determinant for limitations in activities and restrictions in participation.

Conclusion.?We conclude that the MACS is a feasible method to classify manual ability in young adults with CP and normal intelligence with a good manual ability.     

Reformulating masculinity: Traumatic brain injury and the gendered nature of care and domestic roles

Purpose.?This article examines the nexus between masculine identity and participation of men living with traumatic brain injury (TBI) in rural New South Wales, Australia. The article considers the impact of adoption of caring and household duties upon identity and participation satisfaction.

Method.?The focus of this paper is on a finding that emerged from the qualitative phase of a larger project examining participation following TBI in rural and regional areas. During semi-structured interviews, participants were invited to discuss aspects of their participation including their daily occupations, supports, experience of country life and rehabilitation services. A grounded theory methodology shaped the analysis of the interviews.

Results.?Results, relating to the reformation of masculinity, centred upon eight men drawn from the cohort who moved from the role of breadwinner pre-injury to primarily domestic and caring roles post-injury. Their narratives illustrated three responses to altered life circumstances that necessitated the revision of gendered roles: non-acceptance of reformulated masculinity, accepting reformulated masculinity for the sake of others and accepting and personally valuing a reformulated masculinity.

Conclusions.?Participation satisfaction for men who take up responsibility for domestic and/or caring duties following TBI is contingent upon successful reformulation of their gendered identity. The research highlights the need for rehabilitation practitioners to adequately support psychosocial adjustment for men following TBI.