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.

Exploring Work Absences and Return to Work During Social Transition and Following Gender-Affirming Care, a Mixed-Methods Approach: 'Bridging Support Actors Through Literacy'.

PURPOSE: Research on return to work (RTW) following transition-related gender-affirming care (GAC) is lacking. We aim to study the RTW outcomes and experiences of transgender and gender diverse (TGD) people during social and medical transition to understand their needs better and provide tailored support. METHODS: In this convergent mixed-methods study, the questionnaires of 125 employed TGD people, who took steps in transition (social and GAC), were analyzed for personal- and work characteristics, medical work absences, RTW, support at work, and health literacy. In-depth interviews were held with twenty TGD people to explore perceived facilitators and barriers to RTW. RESULTS: One hundred and nine participants reported an average of 38 sick days after GAC. The majority (90.2%) resumed their job at the same employer. Although TGD workers felt supported, their health literacy (55.1%) was lower compared to the general population. The qualitative data analysis revealed four major themes: (1) the need and access to information; (2) having multidisciplinary TGD allies; (3) the influence of the occupational position; (4) the precarious balance between work, life, and GAC. Especially participants with a low health literacy level experienced RTW barriers by struggling: (1) to find and/or apply information; (2) to navigate (occupational) health and insurance services. CONCLUSION: Our research has shown that RTW for TGD individuals is a multifaceted process, affected by personal factors, work-related elements, and the characteristics of the healthcare and social insurance system. Enhancing support for TGD people at work and their RTW requires a high need for centralized information and promoting health literacy while engaging relevant stakeholders, such as prevention services and employers.

How do people living with chronic conditions and their informal caregivers experience primary care? A phenomenological-hermeneutical study.

AIMS AND OBJECTIVES: Gaining insight in how people living with chronic conditions experience primary healthcare within their informal network. BACKGROUND: The primary healthcare system is challenged by the increasing number of people living with chronic conditions. To strengthen chronic care management, literature and policy plans point to a person-centred approach of care (PCC). A first step to identify an appropriate strategy to implement PCC is to gain more insight into the care experiences of these people and their informal caregivers. DESIGN: A phenomenological-hermeneutical philosophy is used. The study is in line with the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). METHOD: In-depth, semi-structured interviews with people living with chronic conditions and informal caregiver dyads (PCDs) (n = 16; 32 individuals) were conducted. An open-ended interview guide was used to elaborate on the PCDs' experiences regarding primary care. A purposive, maximal variation sampling was applied to recruit the participants. RESULTS: Based on sixteen PCDs' reflections, ten themes were identified presenting their experiences with primary care and described quality care as listening and giving attention to what people with chronic conditions want, to what they strive for, and above all to promote their autonomy in a context wherein they are supported by a team of formal caregivers, family and friends. CONCLUSION: To meet the PCDs' needs, self-management should be addressed in an interprofessional environment in which the PCD is an important partner. The findings may facilitate a shift to encourage PCDs in their strengths by enabling them to share their personal goals and by working towards meaningful activities in team collaboration. RELEVANCE TO CLINICAL PRACTICE: Three strategies-self-management support, goal-oriented care, and interprofessional collaboration-have been suggested to improve the PCDs' primary care experiences. These strategies could guide nursing practice in using more and improve high-quality nursing care.

Meaningful activities during COVID-19 lockdown and association with mental health in Belgian adults.

BACKGROUND: The spread of COVID-19 has affected people's daily lives, and the lockdown may have led to a disruption of daily activities and a decrease of people's mental health. AIM: To identify correlates of adults' mental health during the COVID-19 lockdown in Belgium and to assess the role of meaningful activities in particular. METHODS: A cross-sectional web survey for assessing mental health (General Health Questionnaire), resilience (Connor-Davidson Resilience Scale), meaning in activities (Engagement in Meaningful Activities Survey), and demographics was conducted during the first Belgian lockdown between April 24 and May 4, 2020. The lockdown consisted of closing schools, non-essential shops, and recreational settings, employees worked from home or were technically unemployed, and it was forbidden to undertake social activities. Every adult who had access to the internet and lived in Belgium could participate in the survey; respondents were recruited online through social media and e-mails. Hierarchical linear regression was used to identify key correlates. RESULTS: Participants (N = 1781) reported low mental health (M = 14.85/36). In total, 42.4% of the variance in mental health could be explained by variables such as gender, having children, living space, marital status, health condition, and resilience (ß = -.33). Loss of meaningful activities was strongly related to mental health (ß = -.36) and explained 9% incremental variance (R2 change = .092, p < .001) above control variables. CONCLUSIONS: The extent of performing meaningful activities during the COVID-19 lockdown in Belgium was positively related to adults' mental health. Insights from this study can be taken into account during future lockdown measures in case of pandemics.

The relationship between quality of life in a nursing home and personal, organizational, activity-related factors and social satisfaction: a cross-sectional study with multiple linear regression analyses.

Objectives: This study aimed to investigate quality of life in nursing home residents and the relationship with personal, organizational, activity-related factors and social satisfaction.Methods: In a cross-sectional survey study in 73 nursing homes in Flanders, Belgium, 171 cognitively healthy residents were randomly recruited (mean age 85.40 years [±5.88]; 27% men, 73% women). Quality of life, as the dependent/response variable, was measured using anamnestic comparative self-assessment (range -5 to +5). Multiple linear regression (forward stepwise selection) was used (1) to investigate which factors were significantly related to nursing home residents' quality of life and (2) to model the relationship between the variables by fitting a linear equation to the observed data.Results: Nursing home residents reported a quality of life score of 2.12 (±2.16). Mood, self-perceived health status, social satisfaction and educational level were withheld as significant predictors of the anamnestic comparative self-assessment score (p < 0.001), explaining 38.1% of the variance in quality of life.Conclusions: Results suggest that a higher quality of life in nursing homes can be pursued by strategies to prevent depression and to improve nursing home residents' subjective perception of health (e.g. offering good care) and social network. It is recommended that nursing homes prepare for future generations, who will be more educated.

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.

High intensity interval training is associated with greater impact on physical fitness, insulin sensitivity and muscle mitochondrial content in males with overweight/obesity, as opposed to continuous endurance training: a randomized controlled trial.

OBJECTIVES: To evaluate the effect of high intensity training (HIT) on physical fitness, basal respiratory exchange ratio (bRER), insulin sensitivity and muscle histology in overweight/obese men compared to continuous aerobic training (CAT). MATERIAL AND METHODS: 16 male participants with overweight/obesity (age: 42-57 years, body mass index: 28-36 kg/m2) were randomized to HIT (n=8) or CAT (n=8) for 10 weeks, twice a week. HIT was composed of 10 minutes high intensity, 10 minutes continuous aerobic, 10 minutes high intensity exercises. CAT was composed of three times 10 minutes continuous exercising. Changes in anthropometry, physical and metabolic fitness were evaluated. Muscle histology (mitochondria and lipid content) was evaluated by transmission electron microscopy (TEM). RESULTS: HIT showed a significant increase for peak VO2 (P=0.01), for insulin sensitivity (AUC glucose (P<0,001), AUC insulin (P<0,001), OGTT composite score (P=0.007)) and a significant decrease of bRER (P<0.001) compared to CAT. Muscle mitochondrial content was significantly increased after HIT at the subsarcolemmal (P=0.004 number and P=0.001 surface) as well as the intermyofibrillar site (P<0.001 number and P=0.001 surface). CONCLUSION: High intensity training elicits stronger beneficial effects on physical fitness, basal RER, insulin sensitivity, and muscle mitochondrial content, as compared to continuous aerobic training.

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.

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.

Understanding patient needs without understanding the patient: the need for complementary use of professional interpreters in end-of-life care.

High-quality doctor-patient communication in end-of-life care results in better quality of life for patients. In linguistically and culturally diverse societies, language discordant consultations become daily practice, leading to difficulties in eliciting patient preferences toward end-of-life care. Although family members invariably act as informal interpreters, this may cause some ethical dilemmas. We present a case of a palliative patient whose son acted as an interpreter. This case generated a triple- layered ethical dilemma: (i) how to safeguard patient autonomy against paternalistic interventions by family members, (ii) how to respect the relational context in which patient autonomy can be realized, and (iii) how to respect the ethno-cultural values of the patient and his family. These issues are being discussed and reflected upon within the framework shared decision making involving informal- and professional interpreters. The complementary use of professional interpreters next to family members acting as informal interpreters is recommended.

Effect of Soundscape Augmentation on Behavioral Symptoms in People With Dementia: A Pilot Randomized Controlled Trial.

Background and Objectives: Sound is an important environmental factor that influences the expression of behavioral and psychological symptoms of dementia. Recent research on the effect of soundscape has shown promising results in improving environmental impact on people with dementia. However, no controlled studies have aimed to quantify the effects of soundscape intervention on resident outcomes. The aim of this study was to assess the feasibility and impact of a soundscape intervention on people with dementia and behavioral symptoms. Research Design and Methods: Pilot single-blind repeated-measures randomized controlled trial of an augmented soundscape intervention. Participants were people with dementia in a hospital-based specialized dementia unit. Participants were randomized to an augmented soundscape intervention delivered in their room in the morning and evening or treatment as usual, with 2 baseline weeks and 4 weekly post-randomization assessments of the primary and secondary behavioral outcomes. Results: The soundscape intervention was feasible in terms of recruitment, retention, and delivery of the intervention. There were improvements in the neuropsychiatric inventory total scores over time in both groups (-5.89, 95%CI -8.45 to -3.28, p < .001), but no differences between groups. There were no significant group, time, or group × time differences for the Pittsburgh Agitation Scale (PAS) total score. For the PAS-resisting care subscale, there was a significant group × time difference, with a greater reduction in the soundscape group over the study period (-0.81, 95% CI -1.59 to -0.03, p = .042). Discussion and Implications: In this pilot study, soundscape augmentation was a feasible and effective nonpharmacological approach to reducing resistance to care in people with dementia, although it did not improve neuropsychiatric symptoms more globally. Further studies with larger samples and of longer duration are needed to investigate the long-term effects of augmented sonic environments on people with dementia. Clinical Trials Registration Number: NCT04809545.

Biopsychosocial rehabilitation in the working population with chronic low back pain: a concept analysis.

OBJECTIVE: To identify the essential attributes of biopsychosocial rehabilitation for chronic low back pain in the working population. DESIGN: A concept analysis was conducted according to the 8-step method of Walker and Avant. This framework provides a clear concept and theoretical and operational definitions. METHODS: Five databases were searched, followed by a systematic screening. Subsequently, attributes, illustrative cases, antecedents, consequences and empirical referents were formulated. RESULTS: Of the 3793 studies identified, 42 unique references were included. Eleven attributes were identified: therapeutic exercise, psychological support, education, personalization, self-management, participation, follow-up, practice standard, goal-setting, social support, and dietary advice. Subsequently, illustrative cases were described. Antecedents, such as motivation, preparedness and a multidisciplinary team, were found, together with consequences such as decreased pain, less sick-leave and increased function and work status. Finally, examples of empirical referents were given. CONCLUSION: This study identified the attributes that are necessary to develop biopsychosocial rehabilitation intervention programmes for chronic low back pain. The defined concept of biopsychosocial rehabilitation for chronic low back pain may serve as a solid base to further develop and apply interventions. Future research should focus on the objectification of biopsychosocial rehabilitation and conceptualization regarding how personalization is done.

Self-management support (SMS) in primary care practice: a qualitative focus group study of care professionals' experiences.

BACKGROUND: To support self-management of chronically ill persons, innovative approaches of care practice are being developed. Unfortunately, many self-management supporting interventions struggle to achieve reliable and consistent improvements at various levels (patient, provider and healthcare system level). One possible strategy to facilitate translating theory into practice, is to consider the healthcare professionals' perspective prior to the development of new interventions. An exploration of their knowledge and opinion about barriers and facilitators is necessary before employing any self-management support (SMS) intervention. Therefore, our study aims to explore care professionals' perspectives about SMS within the Flemish primary care setting. METHODS: This study used a qualitative study design to examine SMS in primary care setting. Five focus groups were conducted, grouped into three waves. Participants were healthcare professionals in Flanders representing different disciplines and settings. A maximum variation purposive sampling was used to recruit participants. For the data analysis, the framework of thematic networks by Attride-Stirling was applied. RESULTS: A total of 34 healthcare professionals participated. Three global themes related to SMS were derived from the thematic analysis: (1) Characteristics, (2) Support strategies, (3) Barriers and facilitators. SMS was characterised as a collaboration-based and person-centred approach. A variety of supporting strategies were mentioned by the focus group participants. Most strategies consisted of informing and educating patients. Complementary to individual strategies, collaborative strategies were deemed necessary to support self-management. Regarding barriers and facilitators, different patient-related factors were identified. Additionally, competencies of healthcare providers and external factors seem to hinder the implementation of SMS in practice. CONCLUSIONS: This focus group study highlights the importance of a collaborative, person-centred approach to SMS in the context of chronic diseases. Our findings point to the need for interventions that raise awareness and address barriers associated with SMS. Since generic SMS does not exist, the road to success is a growth process in which support must be adapted to the individual patient.

Parental report of early features of developmental coordination disorder: A qualitative study.

BACKGROUND: Developmental Coordination Disorder (DCD) is a neurodevelopmental condition usually diagnosed after five years of age. AIMS: To evaluate parent-reported early markers of DCD between birth and six years of age. METHODS AND PROCEDURES: In-depth semi-structured interviews were conducted with parents of twelve children diagnosed with DCD. Up to three interviews were performed per family. The interviews were then transcribed ad-verbatim and analyzed using an inductive thematic analysis approach. OUTCOMES AND RESULTS: The first theme 'Child-specific features' discusses the children's challenges in diverse developmental domains (motor milestones, activities of daily living, play and exploration, fatigue and sleep, participation, sensory processing, coping skills and friendships, and verbal skills), varying in severity for each child and each domain. The second theme 'Features in the context' discusses subtle markers in the direct environment of the children such as quests for explanations and therapy, specific participation choices, concerns by other caregivers, and the emergence of secondary consequences. CONCLUSIONS AND IMPLICATIONS: This study reports the presence of early features of DCD from the first year of life and suggests important topics to discuss with parents in the diagnostic process of DCD.

General health and working conditions of Flemish primary care professionals.

BACKGROUND: The Quintuple aim explicitly includes 'health and wellbeing of the care team' as requirement for the care of patients. Therefore, we examined working conditions, work engagement and health status of professionals active in primary care in Belgium (Flanders), and how these are interrelated. METHODS: Data of the cross-sectional 'Health professionals survey of the Flemish Primary care academy' of 2020 were examined. We performed logistic regression analyses to study the relationship between working conditions and self-reported dichotomized health of primary care professionals (sample size = 1033). RESULTS: The majority of respondents (90%) reported having a good to very good general health and has a strong work engagement. Quality of employment was high, in particular regarding job security and supportive relations with colleagues, while less in terms of proper rewards and job career opportunities. Working as self-employee (vs. as salaried employee), and in a multidisciplinary group practice (vs. other organizational settings) were positively related to health. Work engagement and all dimensions of employment quality were related to general health, but work family balance, proper rewards, and perceived employability were independently positively related to self-reported health. CONCLUSION: Nine out of 10 Flemish primary care professionals working in diverse conditions, employment arrangements and organizational settings report good health. Work family balance, proper rewards, and perceived employability were important for primary care professionals' health, and could provide opportunities to further strengthen the job quality and health of primary care professionals.

The role of a socially assistive robot in enabling older adults with mild cognitive impairment to cope with the measures of the COVID-19 lockdown: A qualitative study.

BACKGROUND: During the COVID-19 pandemic, mandatory containment measures led to lockdowns and severely diminished social interaction, with older adults being one vulnerable group. Socially assistive robots (SARs) could prove to be an effective intervention. OBJECTIVES: To explore the experiences of older adults with mild cognitive impairment (MCI) with a SAR during the first lockdown in Belgium. METHODS: Inductive thematic analysis was used. After a two-week interaction period with robot James®, semi-structured interviews were conducted. RESULTS: Four people were interviewed (median: 86 years; range: 70-90 years; 2 men, 2 women). Four themes were identified. The first theme described the robot as a companion, alleviating feelings of loneliness and social isolation. The second theme explored the robot in light of meaningful activity. The third theme detailed the technical aspects of the robot and the fourth theme described notable barriers and areas of improvement. CONCLUSION: The study demonstrated the potential of SARs during the first lockdown period in Belgium. The robot proved to be promising in terms of alleviating feelings of loneliness and social isolation. It was found to be both motivating and facilitating in terms of meaningful activity. SIGNIFICANCE: The study provided valuable insights for the care of lonely and occupationally deprived older adults.

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.

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.