Susan J. Forwell

Fatigue and spinal cord injury: a qualitative analysis

ObjectivesTo explore experiences of fatigue among people with spinal cord injuries (SCIs) and factors perceived to contribute to fatigue.SettingKelowna, Prince George, Vancouver and Victoria, British Columbia, Canada.Study designCollaborative, qualitative methodology.MethodsFour focus groups were undertaken simultaneously with a total of 29 participants, comprising a purposive sample of men and women: 21 people with complete and incomplete SCI of high and low tetraplegia and paraplegia, 2 family members, 2 assistants and 4 occupational therapists. Interpretive analysis was grounded in the themes identified in the data.ResultsFatigue was perceived to have cognitive, emotional and physical dimensions and to exert a profound effect on the lives of many people with SCI, such that pleasurable activities were often eschewed to enable the accomplishment of more mundane tasks. Factors most consistently associated with fatigue were pain, depression and hopelessness, side effects of medications, poor quality sleep, spasticity, poor posture, diet, and the effort required to accomplish routine and self-care tasks.ConclusionsFatigue is a complex phenomenon, interlinked with pain, depression and hopelessness that significantly diminishes the quality of life following SCI. Further research is required to provide greater understanding of this issue and to determine appropriate and comprehensive forms of intervention.

Theoretical perspectives of balance and the influence of gender ideologies

Despite increasing attention to balance in everyday life and its impact on health and well‐being, the concept of balance lacks clarity and consensus. Aiming to clarify the fundamental concept, this article discusses four theoretical perspectives drawn from literature: quantity of involvement across occupations, congruence between values and occupations, fulfillment of demands of roles/occupations, and compatibility in occupational participation. As gender is one factor associated with individuals’ perception of balance, the influence of gender on each of these four perspectives is also explored. Finally, these theoretical perspectives are applied to the example of parents: we discuss how gender ideologies and power relations between heterosexual partners may influence perceptions of balance in everyday life in the family context. Implications for future research are discussed.

Toward a Consensus on Rehabilitation Outcomes in MS: Gait and Fatigue: Report of a CMSC Consensus Conference, November 28–29, 2007

A multidisciplinary consensus conference was held on November 28–29, 2007, by the Consortium of Multiple Sclerosis Centers (CMSC) to determine the most appropriate outcome measures for gait and fatigue in people with multiple sclerosis (MS). The goals of this conference were to 1) improve understanding of gait and fatigue outcome measures being used by rehabilitation professionals treating people with MS; 2) establish consensus on outcome measures; and 3) establish consensus on required follow-up for transfer of this knowledge to rehabilitation professionals. The consensus conference and this document are the initial steps toward achieving the stated goals. Although many measures of fatigue exist, it was recommended that a global outcome measure for fatigue be developed that would 1) include a screen for the functional ramifications of fatigue for activities and participation; 2) be quick and easy to administer; 3) demonstrate psychometric integrity for MS; and 4) examine fatigue over a continuum of the M...

Managing fatigue following spinal cord injury: a qualitative exploration.

Purpose. To identify, from the perspectives of people with spinal cord injury (SCI), (a) appropriate components of a fatigue management programme; and (b) important outcomes or indicators of success. Method. Collaborative, qualitative methodology comprising four focus groups undertaken simultaneously in Kelowna, Prince George, Vancouver and Victoria, British Columbia, Canada. Participants included a purposive sample of 21 men and women with complete and incomplete SCI of high and low tetraplegia and paraplegia. Two family members, two care-providing assistants and four occupational therapists provided additional information (total n = 29). Interpretive data analysis identified common themes addressing each research question. Results. Building on those strategies they perceived to facilitate coping with fatigue, the participants identified 10 components of a helpful fatigue management programme. Dimensions of ‘successful’ outcomes from such a programme reflected quality of life concerns: enabling people with SCI to do the things they value, enhancing their sense of control over their lives, reducing pain and helplessness, increasing motivation and enhancing relationships strained by fatigue. Conclusions. This study identifies many of the necessary elements of a fatigue management programme to meet the specific needs of people with SCI; and ascertains important indicators of a successful programme from the perspectives of those who must live with the outcomes.

An Integrative Review of Occupational Science and Theoretical Literature Exploring Transition

An occupational perspective of the experience of transition has been developed in the peer reviewed occupational science literature. While that literature describes the elements of transition, a theory of transition has not been posited. This integrative review aims to evaluate 1) how the literature that has taken an occupational perspective captures the phenomenon of transition in healthy populations, 2) what theoretical literature beyond occupational science describes transition in healthy populations, and 3) the areas of overlap, unique contributions, and omissions that emerge from reviewing these bodies of literature. Journals in OTDBase were searched for an occupational perspective on transition for non-disabled populations. The data from this literature were organized into seven strands, with supporting elements. Then the CINAHL, EconLit, PsycINFO, and Social Science Citation Index databases were searched for theories of transition. Five theories met the inclusion criteria. Overlapping areas between these two bodies of literature included defining transition, addressing transition at the individual level, and strategies to improve the outcomes of transition. Omissions in both sets of literature included transitions at community and population levels, the influence of the physical environment, and a lack of recognition of the deeply rooted Westernized modes of understanding about transitions. This integrative review suggests there is a reasonable body of literature from which to develop a theory of transition that takes an occupational perspective.

Primary and Nonprimary Fatigue in Multiple Sclerosis

Using the fatigue algorithm described in the Clinical Practice Guidelines for Fatigue and Multiple Sclerosis (MS), this study aimed to determine the frequency of fatigue related directly to the MS disease process (primary fatigue) versus that related to disease symptoms such as depression (nonprimary fatigue), differentiate primary from nonprimary MS fatigue, and identify any characteristics unique to primary MS fatigue. Consecutive clinically definite MS patients from the University of British Columbia MS clinic were invited to participate. The screening assessment included standardized scales and questionnaires. In total, 50 patients completed the study. Nonprimary fatigue was present in 36 individuals (72%), of whom all but 2 had multiple factors contributing to fatigue. The most common factors contributing to nonprimary fatigue were sleep problems (58%), mobility limitations (52%), and depression (40%). Compared with patients with nonprimary fatigue, those with isolated primary fatigue had lower fatig...

Interventions for Upper-Limb Intention Tremor in Multiple Sclerosis

Approximately 25% of people with multiple sclerosis (MS) experience upper-limb intention tremor (ULIT), which limits their ability to participate in daily activities. Little research has been conducted on the effectiveness of available treatments for ULIT. The objectives of this study were to investigate the use of occupational therapy interventions to improve eating and handwriting performance in adults with MS and ULIT and, based on these findings, to provide recommendations for the development of a treatment protocol for ULIT. Six adults with MS and ULIT were recruited from an MS clinic. Participants rated their pre- and post-intervention functional performance using the Multi-Dimensional Assessment of Tremor. Interventions included education about tremor, proximal stabilization, hand-over-hand technique, weighted tool, weighted wrist, and splinting. Participants evaluated the techniques using visual analogue scales (VASs). One month after the intervention, participants were interviewed to assess susta...

Photo-Elicitation Interviewing to Capture Children's Perspectives on Family Routines

Introduction: There is little occupational science research about the routines of typically developing school-aged children. Even less exists investigating these concepts from the childs perspective. This may partly be attributed to difficulties interviewing children, childrens challenges with recall, disparities in language and communication, and power differences between children and researchers. Visual methodologies can mitigate these challenges while offering rich understandings of childrens experiences. Objective: This study set out to uncover the occupations and family routines from the perspective of typically-developing school-aged children through the use of photo-elicitation interviewing (PEI) methodology. Methods: Children 7 to 12 years old were asked to take photographs of their occupations and routines over a 1-week period. These photographs were explored with the child during a subsequent interview. Findings: Three themes emerged from the data: how routines are established within a family unit and individual contributions related to orchestration and temporality; weekend versus weekday routines; and how PEI can be utilized to obtain rich data. Conclusion: The harmonious orchestration of routines is essential for establishing roles, and developing responsibilities and collaboration. PEI is a well-suited methodology for occupational science research with this population.

Occupational Therapists’ Views of Nussbaum's Practical Reason and Affiliation Capabilities

People with mental illness typically experience challenges which can be related to Nussbaums Central Human Functional Capabilities. This study explores occupational therapists’ views about their role in enhancing their clients’ capabilities related to Practical Reason and Affiliation. Semi-structured interviews were conducted with 14 occupational therapists in Vancouver, Canada. Interviews were recorded, transcribed, and analyzed thematically. Results indicated that occupational therapists see themselves as playing a role in enhancing the capabilities of people with mental illness with respect to Practical Reason and Affiliation Capabilities. This information suggests a role for Nussbaums framework in practice.

Special Issue on Social Policy and Occupational Science

One of the challenges in putting this special issue together is conceptualizing the term ‘social policy’. A diversity of understandings of social policy and its functions in relation to everyday life exist and are tied to various disciplinary and theoretical locations. For example, social policy can be conceptualized as action taken by a governing body in order to respond to pre-existing social issues or problems (Estes, Biggs, & Phillipson, 2003). In contrast, drawing upon theorists such as Bourdieu and Foucault, social policy is viewed as a means through which power is enacted by naming, prioritizing, framing and shaping particular issues as social problems in ways that are ‘‘permissive of certain activities and prohibitive of others’’ (Biggs, 2001, p. 305). Social policy can also be located at various levels, from local to international. In this issue, we welcomed papers that incorporate varying perspectives on social policy and span local to international initiatives.