Karen Yoshida

The role of children in reporting their physical disability

OBJECTIVE To explore the contributions of children during the development of a disability scale, and their competence using the new scale. DESIGN A new self-report measure of pediatric physical performance, the Activities Scale for Kids (ASK), was developed based on interviews and pilot testing with children. The ASK was then filled out by children on two occasions 2 weeks apart to assess the reliability of child self-report. Validity was assessed by comparison of interview data and ASK scores from children with similar data collected from their parents, and to clinician and family global ratings of disability. SETTING The study was conducted at a pediatric tertiary care hospital and its affiliated rehabilitation center. PATIENTS All subjects, 5 to 15 years of age, experienced activity limitations because of musculoskeletal disorders and were free of cognitive impairment. Thirty children (mean age, 11.5 years) participated in the development of the ASK, and 28 children (mean age, 11.4 years) participated in testing of reliability and validity. RESULTS Children generated items similar to those generated by parents (85% agreement) and identified 10 items not obtained from parents or the literature. Children demonstrated excellent test-retest reliability (intraclass correlation coefficient [ICC] = .97) using the ASK, and their scores were highly concordant with parent-reported ASK scores (ICC = .96). Validity was ascertained by comparison of ASK scores across different levels of disability based on global ratings of families and clinicians (p = .0023). CONCLUSION Children are able to play an important role in pediatric physical disability evaluation.

Disability in low-income countries: Issues and implications

This article reports on a study conducted for the CANADIAN INTERNATIONAL DEVELOPMENT AGENCY by THE INTERNATIONAL CENTRE FOR DISABILITY AND REHABILITATION at the University of Toronto. We critically examined the broad literature in the area of disability and development and in this article we identify the key issues which emerged. Most of the data were collected from existing literature in the academic and practice settings and from the publications of key NGOs and governments. We first, examine disability in the context of low-income countries, and then discuss key critical issues: disability and poverty, disability and health, disability and education, disability and gender, disability and children/youth, disability and conflict/natural disasters and disability and human rights. In all these areas we find reports of discrimination, stigmatisation and marginalisation. We conclude that, as we address issues of multi-cultural disability services in developed countries, it is important to bear in mind the various issues that many people with disabilities and their families bring with them as the result of immigrating from a developing country. Although we address these issues within our own countries, we must bear in mind the changes that are occurring due to globalisation.

Individuals’ experience of living with osteoarthritis of the knee and perceptions of total knee arthroplasty

This study investigated the physical and psychosocial consequences of living with osteoarthritis (OA) in daily life and peoples’ views of total knee arthroplasty (TKA) and the role of physiotherapy. In-depth interview data were used from a prospective qualitative study conducted by the senior author (KY). Participants were 15 volunteers with knee OA who were awaiting TKA at a specialized orthopaedic tertiary care facility in Toronto. A modified grounded theory method approach was used to analyze the interview data. The findings showed that experiences for the participants with OA were conceptualized as a “breakpoint.” The breakpoint was centred on the experiences/processes of living with unremitting pain, the limitations of mobility, leisure and social activities, and the resulting consequences to the participants physical and psychological well-being. In addition to the above experiences, participants also discussed their perceptions of TKA surgery. The findings showed that expectations of TKA were linked to participants’ knowledge of the procedure and its outcomes. The participants listed acquaintances, friends, family members, and doctors as the main sources of knowledge for TKA. On the basis of the above analysis, recommendations are made for developing a preoperative physiotherapy program that would focus on minimizing preoperative disability and maximizing postoperative recovery.

Getting on With Life Positive Experiences of Living With a Spinal Cord Injury

Currently, the dominant cultural beliefs toward disability are negative, and the existing literature is limited with respect to examining how people are using and/or viewing their disabilities positively. The purpose of this study was to identify how individuals living with a spinal cord injury (SCI) viewed and/or used their disability positively, and what contextual influences facilitated this positive approach. This study was a secondary analysis of qualitative data from a larger study. The findings revealed three levels at which disability was viewed and/or used positively by people with SCI: self, peers, and disability community. In addition, several aspects of the participants’ situations were found to facilitate this positive view and/or use of disability: personality, spirituality, support systems, and acceptance of one’s disability. The findings reveal that individuals with SCI are viewing and/or using their disabilities positively in many different ways. This study has significant implications for the direction of future research and for health care professionals who need to increase their advocacy and facilitating roles.

Becoming men: Gender, disability, and transitioning to adulthood

Children and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities.

Women Living With a Spinal Cord Injury: Perceptions About Their Changed Bodies

In this article we illuminate the narratives of women living with a spinal cord injury (SCI) with regard to (a) learning how to live with a changed body and (b) exploring the factors that influence how they feel toward their new bodies. An SCI produces immediate physical impairments resulting in a changed body, which can then have physical, emotional, and social consequences to these women. Through its focus on enhancing the body, physical therapy can help to promote a positive view of the self within the changed body. Our analysis of these womens experiences resulted in a fluid, three-phase framework of learning to live with a changed body that generally moves from (a) discomfort, to (b) moving toward comfort, to (c) comfort. Physical therapy can potentially influence the process of womens gaining comfort with their changed bodies following an SCI. The framework provides a basis for future research on adaptation following SCI.

Women's health outcomes after traumatic brain injury.

BACKGROUND Traumatic brain injury (TBI) is a major public health problem, yet little is known about how this injury may affect long-term outcomes unique to women. This research examined the health outcomes relevant to premenopausal women 5-12 years after injury. METHODS This was a retrospective cohort study at eight participating acute care/rehabilitation facilities. Participants were consecutive eligible women with moderate to severe TBI. A follow-up interview assessed menstrual functioning, fertility, and pregnancy experiences before and after injury as well as cervical cancer screening. Demographic variables, self-rated general and mental health, and functional limitations were also collected. Injury-related information was abstracted from health records. Female control participants recruited were matched on age, education, and geographic location. RESULTS Of the 104 women with TBI (W-TBI), 46% experienced amenorrhea with duration of up to 60 months. Cycles became irregular for 68% of W-TBI after the injury. These findings were significantly different from those of controls. Among W-TBI, menstrual disturbances were associated with injury severity. No differences were shown between W-TBI and controls with respect to fertility, although significantly fewer W-TBI had one or more live births, and they reported more difficulties in the postpartum period than controls. W-TBI were less likely to have regular Pap smears and reported lower mental health, self-rated health, and function. CONCLUSIONS These findings inform prognosis after TBI for women and provide evidence for long-term monitoring of health outcomes and increased support after childbirth. More research is needed in this area, particularly with respect to the neuroendocrine system.

Barriers to nutrition as a health promotion practice for women with disabilities.

The purposes of this study were to examine the barriers to eating well experienced by women with physical disabilities and the services required to improve eating habits. Participants (mean age=48.9, SD=14.4) completed a questionnaire on health promotion behaviours (n=1096), which included a section on nutrition-related behaviours. Of the 31.8% who stated that they experienced barriers to nutrition, 88.9% wished to improve their eating habits. The most common barriers encountered were: too tired to cook (54.6%), organic/health foods too expensive (34.8%), nutritious foods too expensive (34.5%), lack of desire or will power (31.5%), government disability pension does not cover cost of food (30.6%), difficult to shop (25.1%) and not enough time for attendant to shop or prepare food (21.2%). The most common services identified to improve nutrition were: increase in disability pension (45.2%), assistance with shopping (31.3%), programs that deliver food (28.8%), increase attendant time for shopping/cooking (22.0%) and food box programs that provide single servings (20.1%). These results provide a holistic view of health-promoting behaviours in women with physical disabilities and suggest that greater emphasis should be placed on the individual in her social and structural environment when implementing programs for improving nutrition-related behaviours.

Intimate and marital relationships: An insider's perspective

In this paper, the experiences of 28 men with a spinal cord injury (paraplegia) regarding meeting significant others and decisions about long term relationships are discussed. Potential relationships were viewed along five major themes: 1) acceptance of the individual; 2) awareness and assistance with accessibility; 3) altered divisions of labour; 4) the comfort of sexuality and 5) long term plans. Individual experiences are influenced by prevailing views of sexuality and marial roles.

Negotiating Participation: How Women Living With Disabilities Address Barriers to Exercise

Exercise participation among women living with disabilities can be limited as a result of pain, decreased muscle strength, and limited mobility. More “disabling” than these symptoms, however, is a lack of accessible exercise facilities in womens communities. Our study explores how material and social structures and functions existing and operating within womens communities and at community-based exercise facilities affect their participation. Interviews with 15 women living with disabilities were conducted and qualitatively analyzed. Participants discuss the benefits of their exercise participation, in addition to how they experience and negotiate structural and attitudinal barriers within community-based facilities.