Disability Framework Research Articles

Obstacles and Facilitators in Daily Living Activities Among Persons with Spinal Cord Injury: A Systemic Review

Introduction: This systematic review aimed to investigate the level of participation, obstacles, and facilitator factors that influence activities of daily living among persons with spinal cord injury (SCI). Methods: A comprehensive search was conducted in four online databases, namely Google Scholar, PubMed, OT Seeker, and Cochrane Library covering the ten-years period from January 2012 to December 2022. Inclusion criteria encompassed original published studies in English focusing on daily activities, work, participation, obstacles, and facilitators in persons with SCI. Non-peer review sources (e.g., abstracts, grey literature, preprints), and studies unrelated to occupational therapy were excluded. The selected studies were assessed for quality using McMaster University Occupational Therapy Evidence-Based Practice critical review form. Results: Out of the 678 articles identified, ten studies were included after the screening, exploring participation in daily living activities, employment, return to work, leisure activities, family tasks, and community mobility among persons with SCI. Obstacles and facilitators influencing participation in activities of daily living were classified using the International Classification of Functioning, Disability, and Health (ICF) framework. This review highlighted that long-term participation is challenging for persons with SCI, affected by obstacles such as body functions, pain, low self-esteem, and environmental and social factors. Conclusion: The findings underscore the importance of adopting a multidisciplinary rehabilitation approach to enhance participation in daily activities for persons with SCI. Occupational therapy plays a significant role in improving participation levels among persons with SCI.

Exploring mental functions utilised by male youth team-based ball-sport athletes within academy programs: a systematic review and meta-aggregation.

The rise of youth sport academies has led to a focus on long-term athletic development, and exploration into holistic approaches that incorporate psychological attributes to form biopsychosocial frameworks. The primary aim of this systematic review was to profile the psychological attributes of male youth team-based ball-sport athletes in academy-based programs and explore interactions between psychological attributes and athlete participation through the biopsychosocial model, the International Classification of Functioning, Disability and Health framework. This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Six databases; PubMed, SPORTdiscus, Proquest, PsychINFO, Embase and Scopus were searched for relevant publications from root to 14th March 2024. The search returned 3306 records, and after applying the eligibility criteria 51 studies were included at full text and were critically appraised utilising the Mixed Methods Appraisal Tool. Data synthesis revealed 178 mental functions measured across 12 ICF categories, via 66 psychometric tools. Meta-aggregation revealed mean scores for 34 mental functions across eight ICF categories and 12 sub-categories. Male youth team-based ball-sport academy athletes display high levels of orientation to self and high energy levels; moderate to high levels of motivation and self-regulation; moderate levels of psychosocial functions, conscientiousness, regulation of emotion, and organising and planning. Low levels of clinical indicators and burnout were observed. The ICF framework can be utilised as a biopsychosocial framework for sport practitioners looking to profile the multidimensional and complex attributes of team-based ball-sport youth athletes in academy programs. Systematic Review Registration: https://doi.org/10.17605/OSF.IO/9CE24.

SOCIAL PARTICIPATION AMONG OLDER ADULTS WITH UNMET NEED CONSEQUENCES: FROM A DISABILITY PERSPECTIVE

Abstract This study examines the relationship between social participation and consequences arising from unmet ADL, IADL, and mobility needs using disability studies frameworks. The aging field has yet to fully incorporate theoretical perspectives from disability scholarship into our understanding of health, wellbeing, accessibility and inclusion. By situating the experience of aging, aging with care needs, and having unmet care needs within a disability studies lens we gain insight into the ways we are called to redesign the provision of supportive services to ensure meaningful inclusion in community. To illustrate this idea, we use Wave 5 from the National Health and Aging Trends Study (NHATS) (n=7,070) to examine the relationship between ADL, IADL, and mobility unmet need consequences and social participation. Both social participation and unmet need consequences among older adults have been explored from healthcare, quality of life, and economic perspectives. However, there is a lack of scholarship linking these two concepts using a disability lens. Preliminary results from a series of linear regressions show a significant, negative relationship between presence of unmet ADL and mobility need consequences and social participation (p < .001). These findings indicate that experiencing unmet care needs may not only have detrimental effects on health, but on overall adult wellbeing and may be infringing on the ability of older adults to engage with community to the extent they wish. By applying disability frameworks, aging researchers are called to reexamine the ways in which we consider accessibility and full inclusion of older adults with care needs.

The relationship between having a job and the outcome of brief therapy in patients with common mental disorders

BackgroundPrevious studies have shown that being employed is associated not only with patients’ health but also with the outcome of their treatment for severe mental illness. This study examined what influence employment had on improvements in mental health and functioning among patients with common mental disorders who received brief treatment and how patients’ diagnosis, environmental and individual factors moderated the association between being employed and treatment outcome.MethodsThe study used naturalistic data from a cohort of patients in a large mental health franchise in the Netherlands. The data were obtained from electronic registration systems, intake questionnaires and Routine Outcome Monitoring (ROM). The International Classification of Functioning, Disability and Health (ICF) framework was used to identify potential subgroups of patients. Logistic regression models were used to analyze the relationship between employment status and treatment outcome and to determine how the relationship differed among ICF subgroups of patients.ResultsA strong relationship was found between employment status and the outcome of brief therapy for patients with common mental disorders. After potential confounding variables had been controlled, patients who were employed were 54% more likely to recover compared to unemployed patients. Two significant interactions were identified. Among patients who were 60 years of age or younger, being employed was positively related to recovery, but this relationship disappeared in patients older than 60 years. Second, among patients in all living situations there was a positive effect of being employed on recovery, but this effect did not occur among children (18+) who were living with a single parent.ConclusionsBeing employed was positively associated with treatment outcome among both people with a severe mental illness and those with a common mental disorder (CMD). The main strength of this study was its use of a large dataset from a nationwide franchised company. Attention to work is important not only for people with a severe mental illness, but also for people with a CMD. This means that in addition to re-integration methods that focus on people with a severe mental illness, more interventions are needed for people with a CMD.

Using a Social Model to Guide Individualized Education Program Development and Change Educational Paradigms to Be Critically Inclusive.

The Individuals with Disabilities Education Act explicitly acknowledges disability as a natural part of the human experience. However, special education services, including speech-language services, often focus on remediating the characteristics of the individual with the disability rather than addressing the disabling conditions of the school environment or leveraging the supports and resources available or potentially available to the student. The purpose of this article is to provide a social model of disability framework to guide Individualized Education Program (IEP) development and change educational paradigms around language and communication. A discussion of a new theoretical framework, critical inclusion, is situated within the speech-language pathologist's role in the IEP process. An argument for adopting an integrative approach to service delivery through the social model of disability is provided. The Social Communication and Engagement Triad framework is then used to illustrate a social model of disability approach to assessment, IEP goal development, and service delivery case examples. Speech-language pathologists and all educators have a responsibility for creating a space where all learners belong and diversity in all aspects is celebrated. Embracing a social model of disability approach to the IEP process can support practitioners in their work toward creating a more equitable and inclusive education system.

Developing an ecology of disabilities framework: viewing disability inclusively

PurposeThis study introduces an ecological framework for disabilities meant to provide a new model of viewing and learning about disabilities and special education. This model projects a multi-systemic view of factors that influence a person's life, where people with disabilities are active actors in the development of the world. The increased awareness about interconnectedness, globalization, inter- and trans-disciplinarity, influences on human experience, greening, sustainability, inequality, inequity and lack of opportunities is shifting how people think about potential and growth.Design/methodology/approachThe methodological approach is qualitative, interpretive research.FindingsIn disability studies, the Ecological Model of Disabilities helps reframe this uniqueness as part of the spectrum of human experiences. In special education, the Ecoducation Model helps reframe the learning experience.Research limitations/implicationsThis research is conceptual, but it is also all-inclusive, rendering itself to a wide application in educational settings.Practical implicationsThe Ecoducation Model for Special Education is specific to the education of children and adults with disabilities, and it is directly compatible with the broader Ecological Model of Disabilities. These ecological models can be applied to all levels of the ecological system, and to different ecodemes of population. Nevertheless, the ecological models need to be locally implemented, with general principles tailored to national traditions, laws and resources.Social implicationsAdvocating for the pursuit of individual well-being within the larger society, both models call for practical changes in a multitude of areas, including legislation and policy, training of professional personnel, sufficient financial input in programs designed for the care of children and adults with disabilities, change in societal mentalities to fight discrimination, disempowerment and isolation. Because the scope of ecological frameworks is incommensurate, being both interdisciplinary and transdisciplinary, further research possibilities are countless. The ecological perspective opens the fields of disability studies and special education to new theoretical and empirical possibilities.Originality/valueTwo epistemological models are described as new frameworks in disability studies: the Ecological Model of Disabilities and the Ecoducation Model for Special Education. Both are original models that look into the education and inclusion of the person with disabilities.

Return-to-work with long COVID: An Episodic Disability and Total Worker Health® analysis

A growing number of working individuals have developed long COVID (LC) after COVID-19 infection. Economic analyses indicate that workers' LC symptoms contribute to workforce shortages. However, factors that affect return-to-work from perspectives of people with LC remain largely underexplored. This qualitative study of people with LC conducted by researchers living with LC aimed to identify participants' return-to-work experiences using Total Worker Health® and Episodic Disability frameworks. 10% of participants who participated in a mixed-method global internet survey, had LC symptoms >3 months, and responded in English were randomly selected for thematic analysis using NVivo12. 15% of responses were independently double-coded to identify coding discrepancies. Participants (N = 510) were predominately white and had at least a baccalaureate degree. Four primary work-related themes emerged: 1) strong desire and need to return to work motivated by sense of purpose and financial precarity; 2) diverse and episodic LC symptoms intersect with organization of work and home life; 3) pervasiveness of LC disbelief and stigma at work and in medical settings; and 4) support of medical providers is key to successful return-to-work. Participants described how fluctuation of symptoms, exacerbated by work-related tasks, made returning to work challenging. Participants’ ability to work was often predicated on job accommodations and support. Non-work factors were also essential, especially being able to receive an LC medical diagnosis (key to accessing leave and accommodations) and help at home to manage non-work activities. Many participants described barriers accessing these supports, illuminating stigma and disbelief in LC as a medical condition. Qualitative findings indicate needs for workplace accommodations tailored to fluctuating symptoms, continuously re-evaluated by workers and supervisors together. Reductions in medical barriers to access work accommodations is also critical since many medical providers remain unaware of LC, and workers may lack a positive COVID test result.

Association of Rehabilitation Care Duration and Functional Status of People with Chronic Stroke

Introduction: There is limited information on the status of international classification of functioning, disability, and health (ICF) framework in subjects with chronic stroke with varying duration of rehabilitation care. Accordingly, this study investigates whether the duration of rehabilitation care affects the status of ICF in subjects with chronic stroke.
 Materials and Methods: This was an observational cross-section study on 58 individuals with chronic stroke. The number of subjects who received rehabilitation care for less than 3 months and more than 3 months were 22 (group A) and 36 (group B), respectively. The ICF components of impairment of body functions and structure were assessed using the clock drawing test, the Beck depression inventory, and the Fugl-Meyer assessment of motor recovery after stroke. The activity limitation and participation using timed up and go test, the community integration questionnaire, and environmental factors were assessed by the Craig Hospital inventory of environmental factors.
 Results: The Fugl-Meyer assessment and the policy components of the Craig hospital inventory of environmental factors showed a significant difference between the groups. Longer duration of rehabilitation care only showed a positive effect on the Fugl-Meyer assessment scores. No other components of ICF showed any difference between the groups.
 Conclusion: The duration of rehabilitation impacts the impairments of body functions and body structures of ICF components. The study findings are limited and further studies are required before generalizing the results.

Person-Centered Home Care: Exploring Worker-Client Relationships Using an Intersectional and Critical Disability Framework.

More research is needed into how "person-centered care" (PCC) manifests in home care (HC) worker-client relationships. Qualitative data were collected at three time points from twelve HC workers and others to better understand how approaches to care shape the pathways of older adult HC clients with chronic conditions in two Canadian health jurisdictions. This paper uses critical disability and intersectionality frameworks to highlight ways in which PCC enables social and instrumental benefits for workers' and clients. It also exposes difficulties in being flexible and developing interpersonal relationships because of HC policies. Workers also acknowledged risks when trying to prioritize client preferences, sometimes drawing distinctions between reasonable and unreasonable demands. Implications for enhanced training and support for workers around navigating flexibility and boundaries and using a relational approach to PCC are discussed, as are implications for policy-making that protect all parties.

Applying the WHO ICF framework to long COVID patients with persistent respiratory symptoms.

The aim of this study was to evaluate long COVID patients with persistent respiratory symptoms through the application of the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) framework. This national, prospective, multicenter, cross-sectional study was conducted with 213 patients (118 females, 95 males; median age 56 years; range, 20 to 85 years) with long COVID between February 2022 and November 2022. The ICF data were primarily collected through patient interviews and from the acute medical management records, physical examination findings, rehabilitation outcomes, and laboratory test results. Each parameter was linked to the Component Body Functions (CBF), the Component Body Structures (CBS), the Component Activities and Participation (CAP), the Component Environmental Factors (CEF), and Personal Factors according to the ICF linking rules. Analysis was made of the frequency of the problems encountered at each level of ICF category and by what percentage of the patient sample. In the ICF, 21 categories for CBF, 1 category for CBS, and 18 categories of CAP were reported as a significant problem in a Turkish population of long COVID patients with persistent respiratory symptoms. Furthermore, eight categories for CEF were described as a facilitator, and four as a barrier. These results can be of guidance and provide insight into the identification of health and health-related conditions of long COVID patients with persistent respiratory symptoms beyond the pathophysiological aspects, organ involvement, and damage of COVID-19. The ICF can be used in patients with long COVID to describe the types and magnitude of impairments, restrictions, special needs, and complications.

Patient-Reported Outcome Measures for Hearing Aid Benefit and Satisfaction: Content Validity and Readability.

Numerous patient-reported outcome measures (PROMs) are available to measure hearing aid benefit and satisfaction. It is unclear to what extent currently available PROMs on hearing aid outcomes, often developed decades ago, meet current guidelines for good content validity and readability. This study evaluated the content validity and readability of PROMs that focus on perceived hearing aid benefit and/or satisfaction. A literature review was conducted to identify eligible instruments. Content validity evaluation included mapping extracted questionnaire items to the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework. In addition, study design in content validity methodology was evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments study design checklist for PROM instruments. Readability was estimated using the Simple Measure of Gobbledygook measure. Thirteen questionnaires were identified and evaluated. Item content focused primarily on the components of environmental factors as well as activity limitations and participation restrictions with less emphasis on body functions and personal factors. The content validity methodology analysis revealed an underuse or lack of reporting of a qualitative methodology in assessing patient and professional perspectives. All the included questionnaires exceeded the recommended sixth-grade reading level. The categories covered by hearing aid PROMs vary considerably, with no single instrument comprehensively covering all the key ICF components. Future development of hearing aid outcome measures should consider a mixed methodology approach for improved content validity and ensure an appropriate reading level.

Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content. Inclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts. 119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.

The Work Ahead for Intellectual and Developmental Disabilities Research.

In "Toward Equity in Research on Intellectual and Developmental Disabilities," we sought to make entrenched assumptions and practices of intellectual and developmental disabilities research visible by explicitly describing the status quo in terms of models of disability, participant and researcher identities, research priorities, and biases in measurement and treatment approaches. We then curated individual- and systems-level actions drawn from disability justice and broader social justice lenses to offer a way forward. We focused on three major areas (i.e., intersectionality and person-centered approaches, participatory research, and interprofessional collaboration), depicting influences, methods, and actions in a framework of disability, identity, and culture. In this Author Response, we address five commentaries that critique and extend that synthesis.

Information is power: a qualitative study exploring the lived experiences of patients with degenerative cervical radiculopathy.

Degenerative cervical radiculopathy (DCR) can lead to severe pain, paraesthesia, and/or motor weakness, resulting in significant morbidity, disability, and reduced quality of life. Typically, individuals suffer from prolonged symptoms, with time to complete recovery spanning months to years. Little is known about the impact DCR has on peoples' lives. Therefore, this study aimed to explore the everyday experiences of individuals living with DCR. A qualitative study was conducted through an interpretivist lens exploring the experiences of participants. Participants were purposefully recruited and interviewed with 2 research team members. Transcripts were independently analyzed by 2 reviewers and coding was finalized by consensus. Analysis was performed using an interpretative phenomenological approach, with emergent themes mapped onto the 5 domains of the International Classification of Functioning, Disability and Health framework. Eleven participants were interviewed between December 2021 and April 2022. Three themes emerged: the biopsychosocial impact of DCR, role of the health care provider, and uncertainty surrounding DCR. Pain and paraesthesia were the most common symptoms experienced by participants, leading to significant psychological distress and impact to daily activities, most notably driving, housecleaning, sleep, and ability to work. Participants described the uncertainty they experienced as a result of the unpredictable nature of DCR and the important role that health care providers play in their journey with DCR. Health care providers were seen acting as either a facilitator or a barrier to their recovery. The findings from this study can be used by clinicians providing patient-centered care to better understand the experiences of people with DCR.

Comparing the Addiction Severity Index (ASI) and Measurements in the Addictions for Triage and Evaluation (MATE)

Substance use disorder (SUD) assessment and measurement in Brazil, as well as in many other countries, face significant shortcomings. The Measurement in the Addictions for Triage and Evaluation (MATE) was developed as a public domain tool, drawing from validated scales and incorporating World Health Organization International Classification of Functioning, Disability, and Health (ICF) framework. The Brazilian version of the MATE (MATE-pt-BR) was evaluated for its reliability and validity, with a total of 239 subjects participating in the study, and data collected between 11/01/2021 and 09/01/2022. The majority were male (79.2%), with diverse racial backgrounds. The substances most prevalently used in the last 30 days were. Alcohol (73.2%), nicotine (63.6%), and cocaine (44.2%). The mean scores for MATE modules showed variations, with Module Q2 assessing psychological well-being having high internal consistency (Cronbach’s alpha = 0.92). MATE-pt-BR demonstrated robust internal consistency, with Module 6 (personality) and Module 2 (medical and psychiatric consultation indicators) being exceptions. MATE-pt-BR exhibited significant correlations among its sections and strong discriminant validity. Moreover, the paper compares MATE-pt-BR with the Addiction Severity Index (ASI-6), which is considered the gold-standard measure for SUD assessments. MATE-pt-BR offers a valuable tool for assessing substance use and related functional impairments in the Brazilian context.

Development and validation of a WHO ICF compliant hand and upper limb assessment tool for children: The Reach Out questionnaire

BackgroundCurrent tools for evaluating hand and upper limb function in children do not represent all domains of the World Health Organization International Classification of Disability, Functioning and Health (ICF) framework and may not capture an accurate progression or regression of function over time. PurposeBased on this framework, we have developed an assessment tool (Reach Out) to evaluate function in children aged from 2 to 16 years following consultation with an advisory panel of specialists. Study designPrimary clinical study. MethodsConstruct validity along with test-retest reliability, inter-rater reliability and sensitivity to change have all been analyzed to validate the Reach Out assessment tool. ResultsThe assessment tool has been validated in a total of 231 patients. Significant construct validity of 0.64 (P < .00001, 95% confidence interval = 0.56-0.71, n = 231) for both age groups and diagnostic groups was observed. The Reach Out questionnaire was internally consistent with a Cronbach’s Alpha of > 0.8 for most domains in most age groups. Test re-retest scores showed that the questionnaire was reliable with most domains of the questionnaire achieving high scores of reliability (P ≤ .03). We also received positive feedback from participants and parents. ConclusionsThe use of this new tool will help identify both progression and regression of function, allowing a more tailored and holistic approach to treatment in children with conditions affecting the hand and upper limb through the incorporation of International Classification of Disability, Functioning and Health domains. This tool is quicker to complete and can be applied to a wide range of ages and diagnostic groups compared to previous assessment tools.

Goal-setting and personalization under the International Classification of Functioning, Disability, and Health framework: Community reintegration program for post-stroke patients.

Body functions and structures, activities, and participation are the core components in the International Classification of Functioning, Disability, and Health (ICF) to identify post-stroke patients' health conditions. The specification of health conditions enhances the outcomes of post-stroke rehabilitation. This study aimed to explore the extent and the processes in an ICF-based post-stroke rehabilitation program (ICF-PSRP) that could enhance patients' community reintegration level. Post-stroke patients who completed the ICF-PSRP participated in intake and pre-discharge individual face-to-face semi-structured interviews. In addition, case therapists were invited to a face-to-face semi-structured group interview. Clinician experts were invited to complete an interview with the same interview contents as case therapists but in an online format. All interview recordings were analyzed with the Framework analysis. Patients' treatment goals were mapped with the ICF Core Set for Stroke. Out of 37 invited post-stroke patients, thirty-three of them completed the interview. Three case therapists and five clinicians completed the interviews. The goals set by the patients and their caregivers showed a broadening of their scope over the course of the program. The changes in scope ranged from the activities to the participation and environmental components. Increases in patient-therapist interactions played an essential role in the goal-setting process, which were integral to personalizing the treatment content. These characteristics were perceived by all parties who contributed to the program outcomes. The application of ICF's principles and core components offers a useful framework for enhancing post-stroke patients' community reintegration level. Future studies should explore the way in which patient-therapist interaction, exposure to environmental factors, and personalized interventions maximize the benefits of applying this framework to the community integration of post-stroke patients.

Life after paediatric brain tumour; the perspectives of the survivors and their parents.

To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. A qualitative interview study using reflexive thematic analysis. We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications. A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. We used the COREQ guidelines when reporting the study. Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

Content comparison of the EORTC CAT Core, SF-36, FACT-G, and PROMIS role and social functioning measures based on the International Classification of Functioning, Disability and Health.

In line with the World Health Organizations' health definition, patient-reported outcome (PRO) measures frequently cover aspects of social health. Our study aimed to evaluate the role functioning (RF) and social functioning (SF) contents assessed by PRO measures commonly used in cancer patients. We analysed the item content of the SF and RF domains of the EORTC CAT Core, the EORTC QLQ-C30, the SF-36, and the FACT-G aswell as the PROMIS item bank covering the Ability to Participate in Social Roles and Activities. Following an established methodology we linked item content to the International Classification of Functioning, Disability and Health (ICF) framework. The content of 85 items was assigned to three ICF components ('Activities and Participation', 'Body Functions', and 'Environmental Factors'). The EORTC CAT Core RF items were mostly related to the first-level ICF categories'Domestic life' and 'Community, social and civic life', while its SF item bankfocused on 'Interpersonal interactions and relationships'. These three categories were also covered by the PROMIS social participation item bank. TheFACT-G Social/Family scale focused on environmental factors ('SupportandRelationships' and 'Attitudes') while the SF-36 Role-physical/emotional scales had a stronger focus on 'General tasks and demands' and 'Major life areas'. Our results highlight conceptual overlap and differences among PRO measures for the assessment of social health in cancer. This information may help toselect the most appropriate measure for a specific setting or study purpose and to better understand the possibilities of linking scores across different PRO measures.

Severe malaria-related disability in Ethiopian children from the perspectives of caregivers: an interpretive description study

Purpose This study explored severe malaria-related disability in children from the perspectives of their caregivers. Materials and methods The interpretive description qualitative approach was employed. The participants were selected using the purposive sampling technique considering the child’s history of severe malaria, age (0–10 years), and location (urban/rural). Data were collected through face-to-face interviews with sixteen caregivers. Reflexive thematic data analysis was utilized. Through prolonged engagement, reflective journaling, an audit trail, and co-authors’ review, trustworthiness was enhanced. Results The study generated five themes from the interviews: mitigators of disability, contributors of disability, impact on body function, impact on activities and participation, and uncertainties about future well-being. The findings revealed previously unstudied social components of disability and environmental factors. Furthermore, the research uncovered health-related quality of life aspects that are out of the scope of the current comprehensive disability framework. Conclusions The study contributes to a deeper understanding of severe malaria-related disability in children from the biopsychosocial perspective. The findings could help policymakers, researchers, and clinicians who want to design rehabilitation interventions for the affected children or examine the components of disability on a large scale using quantitative methods. IMPLICATIONS FOR REHABILITATION Various contextual factors interacted with severe malaria and influenced functioning either as facilitators or barriers, implying disability related to malaria can be prevented or created. The long-term impacts of severe malaria are not limited to functioning and disability but also affect the health-related quality of life of children who survive severe malaria. Rehabilitation professionals should consider applying comprehensive functioning and disability frameworks such as the ICF when designing (or applying) screening tools, planning interventions, and evaluating the outcomes of intervention for children with severe malaria-related disability. Rehabilitation interventions for children with severe malaria-related disability should consider patient– or caregiver–reported outcomes (components of disability).