Dominique Van de Velde

The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home

Purpose: To open a discourse on the concept of autonomy as a precursor for participation in individuals with Spinal Cord Injury (SCI) by exploring the experiences about their perceived autonomy in their transition period from hospital to home. Method: Based on the ‘grounded theory’ approach; in-depth, semi structured interviews were conducted with 11 SCI-patients. A theoretical sampling strategy was used and the data was analysed according to the constant comparative method. Results: To capture this complexity of autonomy, the results have been structured in themes with regard to the self of the patient and his independency. The analysis showed four different typologies of how autonomy is perceived; (1) the active agent, (2) the active follower, (3) the passive follower and (4) the passive victim. Conclusion: Rehabilitation professionals can help individuals in disconnecting their internalised ideal of independency to avoid the illusion of being autonomous and can gain insight in the patients’ typology and empower patients to avoid the paradox of being autonomous. If the ultimate goal of rehabilitation is participation; empowering the patient to achieve a ‘sense of agency’ instead of autonomy is the central goal for rehabilitation professionals. Empowerment and agency are key topics for the patient to gain mastery over his own life. Implications for Rehabilitation During the SCI rehabilitation process it is important to draw the clients’ attention to the difference between being independent and being autonomous. To enable the client with SCI in experiencing a sense of autonomy, it is recommended to reflect on his entire life-span. Embrace the socially embedded feature of autonomy; do not only focus on the individual but consider also his context. Empower clients in the way they want to be supported within their social context and make this clear and negotiable.

Measuring participation as defined by the World Health Organization in the International Classification of Functioning, Disability and Health. Psychometric properties of the Ghent Participation Scale.

Objective: To examine the internal consistency, test–retest reliability, construct validity, discriminant validity and responsiveness of the Ghent Participation Scale. Design: Cross-sectional study with a test–retest sample. Setting: Six outpatient rehabilitation centres in Belgium. Subjects: A total of 365 outpatients from eight diagnostic groups. Measures: The Ghent Participation Scale, the Impact on Participation and Autonomy, the Utrecht Scale for Evaluation of Rehabilitation-Participation and the Medical outcome study Short Form SF-36. Results: The Ghent Participation Scale was found to have good internal consistency (Cronbach’s α between 0.75 and 0.83). At item level, the test–retest reliability was good; weighted kappas ranged between 0.57 and 0.88. On the dimension level intraclass correlation coefficients ranged between 0.80 and 0.90. Evidence for construct validity came from high correlations between the subscales of the Ghent Participation Scale and four subscales of the Impact on Participation and Autonomy (range, r = −0.71 to −0.87) and two subscales of the Utrecht Scale for Evaluation of Rehabilitation-Participation (range, r = 0.54 to 0.72). Standardized response mean ranged between 0.23 and 0.68 and the area under the curve ranged between 68% and 88%. Conclusion: The Ghent Participation Scale appears to be a valid and reliable method of assessing participation irrespective of the respondent’s health condition. The Ghent Participation Scale is responsive and is able to detect changes over time.

How competent are healthcare professionals in working according to a bio-psycho-social model in healthcare? : the current status and validation of a scale

Background Over the past decades, there has been a paradigm shift from a purely biomedical towards a bio-psycho-social (BPS) conception of disability and illness, which has led to a change in contemporary healthcare. However, there seems to be a gap between the rhetoric and reality of working within a BPS model. It is not clear whether healthcare professionals show the necessary skills and competencies to act according to the BPS model. Objective The aim of this study was (1) to develop a scale to monitor the BPS competencies of healthcare professionals, (2) to define its factor-structure, (3) to check internal consistency, (4) test-retest reliability and (5) feasibility. Design and Setting Item derivation for the BPS scale was based on qualitative research with seven multidisciplinary focus groups (n = 58) of both patients and professionals. In a cross-sectional study design, 368 healthcare professionals completed the BPS scale through a digital platform. An exploratory factor analysis was performed to determine underlying dimensions. Statistical coherence was expressed in item-total correlations and in Cronbach’s α coefficient. An intra-class-correlation coefficient was used to rate the test-retest reliability. Results The qualitative study revealed 45 items. The exploratory factor analysis showed five underlying dimensions labelled as: (1) networking, (2) using the expertise of the client, (3) assessment and reporting, (4) professional knowledge and skills and (5) using the environment. The results show a good to strong homogeneity (item-total ranged from 0.59 to 0.79) and a strong internal consistency (Cronbach’s α ranged from 0.75 to 0.82). ICC ranged between 0.82 and 0.93. Conclusion The BPS scale appeared to be a valid and reliable measure to rate the BPS competencies of the healthcare professionals and offers opportunities for an improvement in the healthcare delivery. Further research is necessary to test the construct validity and to detect whether the scale is responsive and able to detect changes over time.

The client-centred approach as experienced by male neurological rehabilitation clients in occupational therapy. A qualitative study based on a grounded theory tradition

Abstract Purpose To explore the perspectives of male clients in a neurological rehabilitation setting with regard to the occupational therapy they have received and the client-centred approach. Method This study involved a qualitative research design based on the grounded theory tradition. Individual in-depth interviews were used to collect data. Data were analysed using a constant comparative method. Seven male participants from an inpatient neurological setting were included using a theoretical sampling technique. Results Three themes emerged to describe the approach of the therapists to client-centred practice: (a) a shared biomedical focus as the start of the rehabilitation process, (b) the un-simultaneous shift from a biomedical towards a psycho-social focus and (c) formal versus informal nature of gathering client information. Conclusion A client-centred approach entails a shift from the therapist focussing on recovery from the short-term neurological issues towards the long-term consequences of the disease. According to the client, this shift in reasoning must occur at a specific and highly subjective moment during the rehabilitation process. Identifying this moment could strengthen the client-centred approach. Implications for Rehabilitation Client-centred practice entails a shift from recovering the short-term neurological issues towards the long-term psycho-social consequences of the disease. To be effective in client-centred practice, the clients expect from the professional to be an authority with regard to biomedical issues and to be partner with regard to psycho-social issues. Client-centred practice is most likely to be successful when client is susceptible to discuss his psycho-social issues and finding this moment is a challenge for the professional. Using formal methods for goal setting do not necessarily cover all the information needed for a client-centred therapy programme. Rather, using informal methods could lead to a more valid image of the client.

How do men with paraplegia choose activities in the light of striving for optimal participation? A qualitative study, based on a phenomenological–hermeneutical method

The objective of this study was to explore the experiences of men with paraplegia with regard to how they choose activities. The study involved a qualitative research design, based on a phenomenological–hermeneutical method. The findings revealed that the activities participants were choosing could be on a continuum between the individual’s self and the influence from their environment. On this continuum, the choice to perform activities was influenced by two mediating factors: the individual’s activities performed during their life-history, and their activity challenges for the future. We conclude that choosing activities is an individually constructed internal process of negotiation. Feelings of resignation and revolt appear in combination with feelings of justice and injustice when balance is not found. This knowledge provides a better understanding of the impact of spinal cord injury, sheds light on the development of distress after spinal cord injury and sheds new light on individuals’ feelings of participation.

Assessment of activity limitations and participation restrictions with persons with chronic fatigue syndrome: a systematic review

Abstract Purpose: To summarize measurement instruments used to evaluate activity limitations and participation restrictions in patients with chronic fatigue syndrome (CFS) and review the psychometric properties of these instruments. Method: General information of all included measurement instruments was extracted. The methodological quality was evaluated using the COSMIN checklist. Results of the measurement properties were rated based on the quality criteria of Terwee et al. Finally, overall quality was defined per psychometric property and measurement instrument by use of the quality criteria by Schellingerhout et al. Results: A total of 68 articles were identified of which eight evaluated the psychometric properties of a measurement instrument assessing activity limitations and participation restrictions. One disease-specific and 37 generic measurement instruments were found. Limited evidence was found for the psychometric properties and clinical usability of these instruments. However, the CFS-activities and participation questionnaire (APQ) is a disease-specific instrument with moderate content and construct validity. Conclusion: The psychometric properties of the reviewed measurement instruments to evaluate activity limitations and participation restrictions are not sufficiently evaluated. Future research is needed to evaluate the psychometric properties of the measurement instruments, including the other properties of the CFS-APQ. If it is necessary to use a measurement instrument, the CFS-APQ is recommended. Implications for Rehabilitation Chronic fatigue syndrome (CFS). Chronic fatigue syndrome causes activity limitations and participation restrictions in one or more areas of life. Standardized, reliable and valid measurement instruments are necessary to identify these limitations and restrictions. Currently, no measurement instrument is sufficiently evaluated with persons with CFS. If a measurement instrument is needed to identify activity limitations and participation restrictions with persons with CFS, it is recommended to use the CFS-APQ in clinical practice and scientific research.

Updating the evidence on functional capacity evaluation methods: a systematic review

SamenvattingReturn to work (RTW) is often seen as a binary event; the person either returns to work or not. Predicting whether the person will be able to return to work involves assessing his skills versus the demands from the job. Since RTW has become a central aspect on a political and clinical level, improving the prediction of RTW could have a huge potential. Not only to inform vocational rehabilitation workers during the rehabilitation process but also to inform policy makers in their RTW policy.

Quality in dementia care: A cross sectional study on the Bio-Psycho-Social competencies of health care professionals

Objective Professionals in dementia-care ought to be able to work within a Bio-Psycho-Social model. The objectives were to examine whether dementia-care is delivered in a Bio-Psycho-Social way, to explore the influencing factors and to evaluate the factorial validity of the ‘Bio-Psycho-Social-Dementia-Care scale’. Design and setting 413 healthcare-professionals completed the ‘Bio-Psycho-Social-Dementia-Care scale’. Differences between groups (settings, professions, years of experience) were calculated with a student’s t-test and one-way ANOVA. The facture structure of the scale was evaluated using a confirmatory factor analysis. Results The factor-analysis confirmed the 5 subscale-structure (1) networking, (2) using the client’s expertise, (3) assessment and reporting, (4) professional knowledge and skills and (5) using the environment. (No significant differences were found between professionals in residential care and community care for the subscales ‘networking’ and ‘using the client’s expertise’. Professionals in residential care score higher than community care for ‘assessment and reporting’ (p<0,05) and ‘professional knowledge and skills’ (p<0,01) but lower for ‘using the environment’ (p<0,001). The juniors score higher for ‘professional knowledge’ compared to seniors (p<0,01) and the seniors score better for ‘professional experience’ (p<0,01). The Cure and Care disciplines and the Therapy disciplines had higher values in ‘assessment and reporting’ compared to the Social Support disciplines (p<0,001 and p<0.001). The Therapy disciplines scored higher in ‘using professional knowledge and skills’ compared to the Social Support group (p 0.021) and the Cure and Care disciplines (p<0,001). The Social Support disciplines scored higher in ‘using the environment’ compared to the Therapy disciplines (p<0.001) and the Cure and care disciplines (p<0.001). Conclusion The Bio-Psycho-Social-Dementia-scale is a valid tool and offers opportunities not only to rate, but also to improve Bio-Psycho-Social functioning in dementia-care: increase interdisciplinary collaboration, facilitate assessment, combine the strengths of the different professions and install a heterogeneous team with regard to age and experience.

Cross-Cultural Adaptation and Psychometric Evaluation of the Dutch Version of the Work Rehabilitation Questionnaire (WORQ-VL)

Purpose The Work Rehabilitation Questionnaire (WORQ) was developed to evaluate work functioning in vocational rehabilitation, but was not yet available in Dutch. The goal of this study is twofold: a description of the cross-cultural adaptation process (part 1) of the WORQ to be used in Flanders (The Dutch speaking part of Belgium, WORQ-VL) and a presentation of the first psychometric testing of the WORQ-VL (part 2). Methods For part 1, the guidelines for cross-cultural adaptation of self-report measures by Beaton et al. were used to structure the cross-cultural adaptation. For part 2, a cross-sectional study was conducted in patients with musculoskeletal disorders [sample A: hand and wrist rehabilitation (n = 21) and sample B: fibromyalgia patients (n = 93)] who completed the WORQ-VL. Internal consistency and factor structure were examined in the total sample, whereas convergent and discriminant validity of the WORQ-VL were researched in sample A. Results First results on the convergent validity and discriminant validity (small sample size) and internal consistency of the WORQ-VL are promising. The exploratory factor analysis revealed seven factors which were labeled as ‘cognition’, ‘physical’, ‘mood’, ‘activities of daily living’, ‘sensory’, ‘emotional’ and ‘social’. The best evidence was found for the ‘physical’ subscale of the WORQ-VL: strong correlations were found with the ‘physical functioning’ and ‘role limitations—physical’ subscales of the Short-Form Health Survey, respectively r = − .84 and r = − .59, p < .01. As expected, predominantly weak correlations were found with hand grip strength, kinesiophobia, hand-related aesthetics and satisfaction (ranging between r = − .38 and r = .34, p > .05). Conclusions The WORQ-VL is a user-friendly and valuable ICF-based self-report questionnaire to evaluate work functioning. Future studies are highly needed to examine the value of the WORQ within different patient populations and settings in order to examine further the added value of this self-report measure.

Updating the Evidence on Functional Capacity Evaluation Methods: A Systematic Review

Objectives To synthesize the evidence on the psychometrics functional capacity evaluation (FCE) methods. Methods A systematic literature search in nine databases. The resulting articles were screened based on predefined in- and exclusion criteria. Two reviewers independently performed this screening. Included studies were appraised based on their methodological quality. Results The search resulted in 20 eligible studies about nine different FCE methods. The Baltimore Therapeutic Equipment work simulator showed a moderate predictive validity. The Ergo-Kit (EK) showed moderate variability and high inter- and intra-rater reliability. Low discriminative abilities and high convergent validity were found for the EK. Concurrent validity of the EK and the ERGOS Work Simulator was low to moderate. Moderate to high test–retest, inter- and intra-reliability was found in the Isernhagen Work-Systems (IWS) FCE. The predictive validity of the IWS was low. The physical work performance evaluation (PWPE) showed moderate test–retest reliability and moderate to high inter-rater reliability. Low internal and external responsiveness were found for the PWPE, predictive validity was high. The predictive validity of the short-form FCE was also high but need to be further examined on several psychometric properties. Low discriminative and convergent validity were found for the work disability functional assessment battery. The WorkHab showed moderate to high test–retest, inter- and intra-rater reliability. Conclusion Well-known FCE methods have been rigorously studied, but some of the research indicates weaknesses in their reliability and validity. Future research should address how these weaknesses can be overcome.