Pim Kuipers

The relationship between quality of life and disability across the lifespan for people with spinal cord injury

Study design:Prospective cross-sectional survey.Objectives:To compare quality of life (QOL) for people with spinal cord injury (SCI) and their able-bodied peers and to investigate the relationship between QOL and disability (impairments, activity limitations and participation restrictions) across the lifespan, for people with SCI.Setting:A community outreach service for people with SCI in Queensland, Australia.Methods:A random sample of 270 individuals who sustained SCI during the past 60 years was surveyed using a guided telephone interview format. The sample was drawn from the archival records of a statewide rehabilitation service. QOL was measured using the World Health Organization Quality of Life Assessment Instrument-Bref, impairment was measured according to the American Spinal Injury Association classification and the Secondary Condition Surveillance Instrument, activity limitations using the motor subscale of the Functional Independence Measure and participation restrictions using the Community Integration Measure. Lifespan was considered in terms of age and time since injury. Correlation and regression analyses were employed to determine the relationship between QOL and components of disability across the lifespan.Results:QOL was significantly poorer for people with SCI compared to the Australian norm. It was found to be associated with secondary impairments, activity limitations and participation restrictions but not with neurological level, age or time since injury. The single most important predictor of QOL was secondary impairments whereas the second most important predictor was participation.Conclusion:To optimize QOL across the lifespan, rehabilitation services must maintain their focus on functional attainment and minimizing secondary conditions, although at the same time enabling participation.

A metacognitive contextual intervention to enhance error awareness and functional outcome following traumatic brain injury: A single-case experimental design

Very few empirically validated interventions for improving metacognitive skills (i.e., self-awareness and self-regulation) and functional outcomes have been reported. This single-case experimental study presents JM, a 36-year-old man with a very severe traumatic brain injury (TBI) who demonstrated long-term awareness deficits. Treatment at four years post-injury involved a metacognitive contextual intervention based on a conceptualization of neuro-cognitive, psychological, and socio-environmental factors contributing to his awareness deficits. The 16-week intervention targeted error awareness and self-correction in two real life settings: (a) cooking at home; and (b) volunteer work. Outcome measures included behavioral observation of error behavior and standardized awareness measures. Relative to baseline performance in the cooking setting, JM demonstrated a 44% reduction in error frequency and increased self-correction. Although no spontaneous generalization was evident in the volunteer work setting, specific training in this environment led to a 39% decrease in errors. JM later gained paid employment and received brief metacognitive training in his work environment. JMs global self-knowledge of deficits assessed by self-report was unchanged after the program. Overall, the study provides preliminary support for a metacognitive contextual approach to improve error awareness and functional outcome in real life settings.

Comparison of the Sydney Psychosocial Reintegration Scale (SPRS) with the Community Integration Questionnaire (CIQ): psychometric properties

Primary objective: This study compared the psychometric properties of two community integration measures used with people with acquired brain injury (ABI) in the community. Research design: Questionnaires were mailed-out to people with ABI and nominated proxies. Methods and procedures: Responses were obtained from 96 people with ABI and 121 proxies on the Community Integration Questionnaire (CIQ) and the Sydney Psychosocial Reintegration Scale (SPRS). Main outcomes and results: Matched client-proxy scores were not significantly different. The SPRS had greater internal consistency and more normal distributions than the CIQ. Correlations between the three pairs of theoretically parallel sub-scales were modest (0.41–0.60). Multi-dimensional scaling did not support the theoretical structure of the sub-scales, but found two dimensions underpinning the measurement of community integration. Conclusions: Mail-out administration is associated with poor completion rates. The SPRS has sound psychometric properties when compared to the CIQ. Further research investigating the theoretical structure of community integration in ABI is recommended.

Community-based rehabilitation: opportunity and challenge.

Community-based rehabilitation (CBR) is the main way in which disabled people in most of the world have any chance of accessing rehabilitation services. CBR was first promoted by WHO in the mid-1970s to address the shortage of rehabilitation assistance by providing services in the community with use of local resources. The strategy drew on the principles of primary health care, accepted international rehabilitation practices of the time, and also existing local practices.

The lived experience of dysphagia following non-surgical treatment for head and neck cancer

Abstract The prevalence and severity of dysphagia in people treated non-surgically for primary head and neck cancer (HNC) is well documented. However, few studies have looked beyond the physiological impairment to explore the lived experience of dysphagia in the post-treatment period of HNC. The current study adopted a person-centred, qualitative approach to describe the experiences of people living with dysphagia in the months and years following non-surgical treatment for HNC. Using maximum variation sampling, 24 participants who had undergone radiotherapy treatment for HNC were recruited. Individual interviews were conducted to explore the impact of dysphagia on participants’ everyday lives. The themes identified included: (1) physical changes related to swallowing; (2) emotions evoked by living with dysphagia; (3) altered perceptions and changes in appreciation of food; and (4) personal and lifestyle impacts. The data revealed the breadth and significance of the impact of dysphagia on the lives of people treated curatively for HNC. Assessment and management in the post-treatment period must be sufficiently holistic to address both the changing physical states and the psychosocial needs of people with dysphagia following HNC. Rehabilitation services which focus only on impairment-based management will fail to fully meet the support needs of this clinical population.

Investigating Changes in Quality of Life and Function Along the Lifespan for People With Spinal Cord Injury

OBJECTIVE To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING Telephone interviews with participants in their home environment. PARTICIPANTS People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner’s dysphagia, (3) the disconnect between carers’ expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

The perceived benefits of the chronic disease self-management program among participants with stroke: A qualitative study

Despite the expense associated with rehabilitation following stroke, dissatisfaction with psychosocial outcomes is common (Thomas & Parry, 1996). The rehabilitation system has been critiqued as lacking a theoretical base for psychosocial interventions (Goldberg, Segal, Berk, Schall, & Gershkoff, 1997). The current paper examines the possible role of the Chronic Disease Self-Management Program ([CDSMP] Lorig, 1996) in contributing to the psychosocial rehabilitation of people with stroke. This paper focuses on the analysis of incidental comments made by participants about a version of the CDSMP, tailored for people with stroke. These comments, collected over an 18-month follow-up period, provide interesting insights into the key aspects of the program. Six informative themes emerged from the more specific comments, namely (1) the importance of social contact and comparison, (2) increased awareness and knowledge about stroke, (3) motivation to pursue goals and activities, (4) a sense of achievement, (5) maintenance of gains, and (6) the paradoxical nature of social support. According to participants, the program was associated with enhanced self-efficacy. Other reported benefits (such as social support and enhanced knowledge) were indirectly associated with the program and appeared to reflect social aspects of the group and its stroke-specific focus. Maintenance of gains made by participants was seen as a crucial issue.

Evaluation of an outpatient, peer group intervention for people with acquired brain injury based on the ICF 'Environment' dimension.

Purpose. This study aimed to evaluate the effectiveness of an intervention based on the ICF ‘Environment’ dimension for enhancing the well-being and psychosocial outcomes of patients with acquired brain injury in an outpatient (day hospital) setting. Method. A mixed methodology cohort study comparing an intervention group with an historical non-intervention group using pre- and post-intervention and follow-up measures. The 6-week group intervention involved participants and their significant others. Pre- and post-intervention data from the intervention group and the non-intervention group were compared using 2 × 2 analyses of variance for five standardised outcome measures. Semi-structured interviews with intervention participants and significant others were used to provide qualitative feedback. Results. A significant group by time interaction was found for level of community integration on the Sydney Psychosocial Reintegration Scale and depression scores on the Hospital Anxiety and Depression Scale, with greater improvements for the intervention group compared with the non-intervention group. No other significant differences between groups were found. Gains in community integration were maintained by the intervention group at 1-month follow-up. Qualitative feedback from participants indicated the value of: sharing experiences, the group content, goal setting, comparing with others and the group processes. Conclusions. The Environment-focused intervention was useful in improving patient outcomes in terms of better self-reported community integration.

Goal-directed outpatient rehabilitation following TBI: A pilot study of programme effectiveness and comparison of outcomes in home and day hospital settings

Primary objective: To determine (i) the effectiveness of a goal-directed, environment-focused occupational therapy intervention and (ii) to compare rehabilitation gains across a day hospital (outpatient) setting and home setting. Research design: Repeated measures cross-over design with pre–post test measures and a baseline control period, random allocation to a treatment setting sequence and an independent outcome assessor who was blinded to treatment sequence. Methods and procedures: Descriptive and non-parametric comparative analyses employed. Fourteen participants with severe traumatic brain injury completed a 12 week outpatient occupational therapy programme. The programme was directed by the participants chosen goals, which were established using a client-centred, structured, goal-planning process. Outcome measures included Goal attainment scaling, the Canadian Occupational Performance Measure, the Sydney Psychosocial Reintegration Scale, the Mayo-Portland Adaptability Index, the Craig Hospital Inventory of Environmental Factors and self-rated satisfaction with therapy. Main outcomes and results: The therapy programme resulted in significant improvements in goal attainment, occupational performance, psychosocial reintegration and ability and adjustment levels, compared with baseline. Differences in gains made in home vs day hospital settings were not statistically significant, with the exception of higher levels of patient satisfaction with therapy at home. Conclusions: To assist further with decision-making about where to conduct therapy, further research is needed to compare the outcomes and determine the cost effectiveness of therapy at home and in day hospital settings.