Journey Through Healthcare of People With Complications of Type 2 Diabetes: A Qualitative Study of Lived Experiences.

Background: Despite its overall good performance, the Belgium healthcare system scores less well in providing equal access to healthcare compared to other European countries. This increases the risk of people worse off to receive late diagnosis and to get complications of chronic diseases. Methods: This study aims to achieve a deeper understanding of how people with complications of a chronic disease - diabetes type 2 - experience care in the Belgium health system through semi-structured interviews with extreme case study sampling of people with advanced diabetes, and inductive analysis. Results: The results show that most respondents were diagnosed late in the course of their disease. There are variations in treatment and type of provider. People appreciate the personal and long-lasting contact with a medical doctor, while the contact with and role of paramedical providers was less recognized. Disease management has a significant impact on their financial budget and some respondents experienced barriers to obtain additional financial support. Discussion: Non-medical costs are not reimbursed, presenting a high burden to people. Self-management is tedious and hampered by other worries that people may have, such as financial constraints and coping with important life events. To conclude this study highlighted the need to improve diabetes screening. We suggest to enhance the role of paramedical professionals, integrate a social care worker, reduce financial constraints, and increase health literacy through more patient-centered, goal-oriented care.

The first step in developing an International Classification of Functioning, Disability and Health Core Set for Vision Loss: A systematic review.

AIM: As a first step in developing an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with vision loss, this systematic review sought to identify the researchers' perspective by identifying the most often used outcome measures and research topics obtained from studies on adults with vision loss. METHODS: PubMed, Embase, CINAHL, APA PsycINFO and Web of Science were searched for studies on vision loss. Meaningful outcome measures and research topics were linked to the ICF components: environmental factors, body functions, body structures and the Activities and Participation life domains. RESULTS: After deduplication, 7219 records remained, of which 2328 articles were eligible for further review. For feasibility reasons, approximately 20% were randomly chosen from every publication year, resulting in 446 included articles. After full-text reading, 349 articles remained, describing 753 outcome measures based on questionnaires and 2771 additional research topics that could be linked to the ICF. Most were linked to the component Activities and Participation, with a focus on recreation and leisure activities (ICF code d920, 70%), reading (d166, 34%) and driving (d475, 27%). For the component body function, seeing functions (b210, 83%) were most often reported. Outcome measures and research topics were least often linked to the body structure component and environmental factors. CONCLUSION: The broad range of ICF categories identified in this systematic review represents the variety of functioning typical for adults with vision loss. These results reflect the focus of researchers over the past 21 years by using various vision-related outcomes. In our next steps to develop the ICF Core Set for Vision Loss, we will include perspectives of experts and lived experience.

Self-Management Analysis in Chronic Conditions (SMACC) checklist: an international consensus-based tool to develop, compare and evaluate self-management support programmes.

OBJECTIVES: The Self-Management Analysis in Chronic Conditions (SMACC) checklist was developed as a guidance tool to support the development, comparison and evaluation of self-management support programmes for persons with a chronic condition. The checklist was based on a previously performed concept analysis of self-management. The aim of this study was to validate its content using an international Delphi study and to deliver a final version. DESIGN: A two-round Delphi study was conducted between October 2022 and January 2023. Using the researchers' networks, professionals with research or clinical expertise in self-management support and chronic conditions were recruited via online purposive snowball sampling. Participants were asked to score each item of the checklist (16 items total) on 3 content validity indicators: (1) clarity and comprehensibility, (2) relevance and importance and (3) degree of alignment with the overall goal of the checklist to promote adequate and comprehensive self-management support programmes. A consensus threshold of 75% agreement was used. The participants were also asked general questions about the checklist as a whole and were asked to provide feedback considering its refinement. RESULTS: Fifty-four professionals with an average 14.5 years of experience participated in round 1, 48 with an average 12.5 years of experience participated in round 2. The majority of professionals were from Western Europe. For the majority of items consensus was reached after round 1. In round 2, 3 of the 4 remaining items reached consensus, 1 last item was retained based on highly recurring feedback. CONCLUSIONS: The SMACC checklist was considered a valid and comprehensive tool to aid the development, evaluation and comparison of self-management support programmes. It was acknowledged as a useful instrument to supplement existing frameworks and was seen as feasible to implement in both research and clinical settings. Further validation in the field, with input from patients and peer experts, will be valuable.

Self-Management Interventions for Facilitating Life Participation for Persons with Kidney Failure: A Systematic Review.

BACKGROUND: For persons with kidney failure, life participation is a critically important outcome, strongly linked to quality of life and mortality. To support patients' self-management abilities, three domains are typically emphasized: medical management, emotional management, and management of everyday life ( i.e. , role management). Although role management is strongly linked to life participation, there is currently limited research on interventions designed to support it. We explored existing self-management interventions that aim to support everyday life functioning, rather than only medical management. METHODS: In this systematic review and qualitative meta-synthesis, we searched MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and CENTRAL up to April 2022 for interventional studies involving self-management interventions designed, at least partly, to support management of everyday life. The guidelines by Sandelowski and Barosso were used to analyze and synthesize the results. A taxonomy of everyday self-management strategies was used to further explore intervention content. Study quality was assessed using the Cochrane Collaboration risk-of-bias tools. Evidence of effectiveness was summarized, and a meta-analysis of eligible outcomes was conducted. RESULTS: Of 22,667 records, 53 studies were included in the meta-synthesis. Most self-management interventions focused on medical management. Included interventions involved strategies to support eight domains: Activities of daily living, Work and school life, Meaningful occupations, Leisure activities, Mobility and travel, Interpersonal relationships, Role functioning, and Social participation. Major interventions focused on providing education, skill training, counseling, and cognitive behavioral therapy. Evidence of effectiveness was reported across a wide range of patient-reported outcomes, including (health-related) quality of life, depression, and self-efficacy. Studies were geographically concentrated and were of moderate to low quality. CONCLUSIONS: Despite its well-recognized importance, research on interventions to improve life participation mostly consisted of pilot and feasibility studies and studies of low quality. Interventions were reported heterogeneously, limiting comparability, and were restricted to specific regions and cultures, limiting generalizability.

The underpinning of meaningful activities by brain correlates: a systematic review.

Introduction: Engaging in meaningful activities contributes to health and wellbeing. Research identifies meaningfulness by analysing retrospective and subjective data such as personal experiences in activities. Objectively measuring meaningful activities by registering the brain (fNIRS, EEG, PET, fMRI) remains poorly investigated. Methods: A systematic review using PubMed, Web of Science, CINAHL, and Cochrane Library. Findings: Thirty-one studies investigating the correlations between daily activities in adults, their degree of meaningfulness for the participant, and the brain areas involved, were identified. The activities could be classified according to the degree of meaningfulness, using the attributes of meaningfulness described in the literature. Eleven study activities contained all attributes, which means that these can be assumed to be meaningful for the participant. Brain areas involved in these activities were generally related to emotional and affective processing, motivation, and reward. Conclusion: Although it is demonstrated that neural correlates of meaningful activities can be measured objectively by neurophysiological registration techniques, "meaning" as such has not yet been investigated explicitly. Further neurophysiological research for objective monitoring of meaningful activities is recommended.

The impact of covid-19 lockdown on the Quality of life, meaningful activities, and frailty in community-dwelling octogenarians: A study in Belgium.

OBJECTIVES: To investigate the impact of COVID-19 lockdown on quality of life (QoL), meaningful daily activities, and (pre)frailty in community-dwelling octogenarians. METHODS: Cross-sectional design with bivariate and multiple linear regression modeling using a stepwise approach examining the level of QoL during the COVID-19 lockdown in a group of 215 community-dwelling octogenarians (Mage = 86.49 ± 3.02). A comprehensive set of biopsychosocial variables (FRAIL scale, general health, engagement in meaningful activities survey, questions on loneliness, and feelings) were used as explaining variables. RESULTS: Particularly, a decrease in daily activities, social activities, and an increase in free times activities were observed, but the decrease in QoL could be explained by the meaningfulness in activities, together with experiencing emptiness in life, taking ≥ 4 medications a day and feeling down or depressed. CONCLUSIONS: We tried to understand which components contribute to and might affect a person's QoL caused by restrictions imposed by the governance and its influence on the lives of the community-dwelling octogenarians. As such, this output could be a baseline for the development of minimally impacting countermeasures during future lockdowns. CLINICAL IMPLICATIONS: Studying lifestyle changes and thus also variables related to QoL during a pandemic, may support policymakers and practitioners to develop relevant interventions.

IMBA-ICF linking by integrating consensus methods: How group consensus of experts can contribute to in-depth linking of instruments to the ICF.

BACKGROUND: A frame of reference is needed to increase the comparability of vocational rehabilitation assessment instruments and the interpretation of their results. The International Classification of Functioning, Disability and Health (ICF) is a relevant framework, and when linking rules are used, items from existing assessment instruments can be linked to the appropriate categories as described in the ICF. OBJECTIVE: To develop an adapted linking methodology in which experts are involved by means of the application of consensus methods and to transfer this result in a step-by-step set of guidelines, supporting researchers and professionals, linking complex instruments to the ICF. METHODS: The main researcher developed the initial linking of the Integration von Menschen mit Behinderungen in die Arbeitswelt (IMBA) to the ICF by rigorously applying the refined ICF linking rules. To validate this linking, the Delphi and nominal group technique was integrated through different steps, and experts were involved in the process. The method section describes the linking process chronologically with focuses on the used approach, the involvement of experts, and the processing of the output. RESULTS: The results are presented in a 7-step set of guidelines describing the chronological process from the initial to the validated linking. These guidelines describe the core elements in the application of the linking rules and consensus methods in a manual for researchers who are interested in linking complex instruments to the ICF by involving experts. CONCLUSIONS: The Delphi and nominal group technique can be successfully integrated in the linking process, making it possible to involve experts in linking complex instruments to the ICF. A homogeneous composition of the expert panel in terms of knowledge, a heterogeneous composition in terms of setting, a rigorous and repeated application of the linking rules, and structured processing of the output are essential to achieve a valid linking.

The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships.

Background: People with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have. Objective: The aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships. Methods: A phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants. Results: Four themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by the disease, including relationship with their partner, their children, their friends, strangers, fellow-sufferers and health care professionals.

Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls.

Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient's level of participation.

Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome".

BACKGROUND: "Ehlers-Danlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS". METHODS: An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. RESULTS: Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. CONCLUSION: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time.Implications for rehabilitation"Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients.Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work.Work has positive effects in the lives of people with "Hypermobile EDS."Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS."

A Qualitative Photo Elicitation Research Study to elicit the perception of young children with Developmental Disabilities such as ADHD and/or DCD and/or ASD on their participation.

Participation, defined as 'involvement in life situations' according to the World Health Organisation, is a well-recognized concept and critical indicator of quality of life. In addition it has become an important outcome measure in child rehabilitation. However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation. An adapted informed consent based on a comic strip was used to get the children's assent. A Photo Elicitation study was used, in which photographs were taken by the children when they were involved in meaningful activities. The photographs were then used to facilitate communication with the children and to initiate in depth-interviews. Forty-seven interviews with 16 children between five and nine years were conducted based on their photographs. This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation. Data was analysed by means of an inductive thematic analysis. Results showed that children perceived their participation as satisfying when they can play, learn and join in family gatherings resulting in feelings of inclusion, recognition and belonging. When there are-on occasions-moments that their participation was obstructed, the children used two strategies to resolve it. Or they walked away from it and choose not to participate, or when autonomously motivated for the activity, they relied primarily on their context (i.e. mothers) as enabling their participation. Related to the data, children discussed themes related to their person, activities, connections and mediators between those themes. These themes fit well within earlier and current research on the subject of participation.

Parents' perspectives on participation of young children with attention deficit hyperactivity disorder, developmental coordination disorder, and/ or autism spectrum disorder: A systematic scoping review.

BACKGROUND: During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer-reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). METHODS: The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. RESULTS: A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child-Youth framework. Concepts contained in these studies were linked to "activities and participation" (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment-focused factors identified were situated on "support and relationships, " "attitudes, " and "services, systems, and policies." CONCLUSION: The review revealed guidelines focusing on family-centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD).

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.

Application of participation in clinical practice: Key issues.

BACKGROUND: Rehabilitation services are increasingly targeting involvement in daily life. In the International Classification of Functioning, Disability and Health this is referred to as "participation". How-ever, questions have arisen regarding the conceptualization of participation, and consensus is lacking. METHODS: The first phase of this study is a critical review of the literature to detect recurring conceptual problems in the application of participation and how researchers deal with these. The second phase is a systematic review to identify how participation measures are operationalized. RESULTS: The critical review found possible solutions to 4 recurring key limitations: (i) how to deal with ambiguity and vagueness regarding the term "participation"; (ii) how to differentiate between activity and participation; (iii) what is the current empirical knowledge about the subjective aspects of participation; (iv) what are the different ways to measure participation. The systematic review found 18 instruments operationalizing participation in different ways: (i) unidimensional: frequency of performing activities; (ii) unidimensional: limitations in experiencing participation when performing activities; (iii) multidimensional: multiple subjective dimensions when performing activities; and (iv) multidimensional: objective and subjective dimensions. DISCUSSION AND CONCLUSION: Notwithstanding an increasing body of knowledge, some issues remain unclear and how participation is measured is subject to debate. This results in difficulties in the use of participation in clinical practice. However, insight into the current body of knowledge and awareness of shortcomings might help clinicians who aim to apply participation in practice.

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.

The influence of Ehlers-Danlos syndrome - hypermobility type, on motherhood: A phenomenological, hermeneutical study.

BACKGROUND: The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspects of daily life. "Living with limitations" is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of the present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life and becoming and being a mother. METHOD: A phenomenological-hermeneutical study, using in-depth interviews. Patients were selected by a purposive sampling strategy. RESULTS: This study shows that the EDS-HT syndrome affects daily life. Ten woman between 31 and 65 years were interviewed. They have between 2 and 5 children. The data analysis results in six themes. (1) Getting a diagnosis is a relief and supports the choice to become a mother; (2) EDS-HT causes emotional distress, imposes a physical burden and has a major impact on social behavior; (3) EDS-HT demands a restructuring of everyday activities; (4) Children's and mothers' expectations do not correspond; (5) Having a supportive social and physical environment is of major importance; (6) The presence of the child reduces the feeling of illness of the mother. CONCLUSION: The diagnosis of EDS-HT is a catalysing factor in the choice of whether or not to become a mother. EDS-HT has a huge impact on bodily functions, which in turn influences activities and participation. IMPLICATIONS: This study gives insight in the activities of daily life of persons with EDS-HT. Health care professionals can be of great importance to help patients in (re)organizing their lives according to the available energy and in supporting their choices. They can help defining goals and setting priorities in daily life.

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.