Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Background. Patients may develop primary (congenital) or secondary (acquired) lymphedema, causing significant physical and psychosocial problems. To plan treatment for lymphedema and monitor a patient's progress, swelling, and problems in functioning associated with lymphedema development should be assessed at baseline and follow-up. Objective. The purpose of this study was to investigate the reliability (test-retest, internal consistency, and measurement variability) and validity (content and construct) of data obtained with the Lymphoedema Functioning, Disability and Health Questionnaire for Lower Limb Lymphoedema (Lymph-ICF-LL). Design. This was a multicenter, cross-sectional study. Methods. The Lymph-ICF-LL is a descriptive, evaluative tool containing 28 questions about impairments in function, activity limitations, and participation restrictions in patients with lower limb lymphedema. The questionnaire has 5 domains: physical function, mental function, general tasks/household activities, mobility activities, and life domains/social life. The reliability and validity of the Lymph-ICF-LL were examined in 30 participants with objective lower limb lymphedema. Results. Intraclass correlation coefficients for test-retest reliability ranged from.69 to.94, and Cronbach alpha coefficients for internal consistency ranged from.82 to.97. Measurement variability was acceptable (standard error of measurement=5.9-12.6). Content validity was good because all questions were understandable for 93% of participants, the scoring system (visual analog scale) was clear, and the questionnaire was comprehensive for 90% of participants. Construct validity was good. All hypotheses for assessing convergent validity and divergent validity were accepted. Limitations. The known-groups validity and responsiveness of the Dutch Lymph-ICF-LL and the cross-cultural validity of the English version of the Lymph-ICF-LL were not investigated. Conclusions. The Lymph-ICF-LL is a Dutch questionnaire with evidence of reliability and validity for assessing impairments in function, activity limitations, and participation restrictions in people with primary or secondary lower limb lymphedema. © 2014 American Physical Therapy Association.
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Aims and objectives. To compare a functioning assessment based on the International Classification of Functioning, Disabilityand Health (ICF) with a conventional medical assessment, in terms of their respective consequences for health professionals’clinical decision-making and the fit with patient’s own perspective of health.Background. In chronic diseases, pathogenic-oriented health care falls short in generating all the information required fordetermining healthcare provision to improve health. A broader, so-called salutogenic approach, by using the ICF, focusingon how to stay healthy, rather than on what causes diseases, seems more appropriate.Design. A cross-sectional comparative study using data from a randomised controlled trial.Methods. Data about patient problems and professional healthcare activities were collected from a total of 81 patients withsevere multiple sclerosis who were randomly assigned to one of two groups: the ICF group, assessed with a functioningassessment (n = 43), and the medical group, assessed with a conventional medical assessment (n = 38). Data were analysedstatistically using descriptive and inferential statistics.Results. A functioning assessment resulted in the registration of significantly more patient problems in the health components‘participation’ and ‘environmental factors’, as well as significantly more professional healthcare activities befitting thesecomponents. The ICF group had a significant positive correlation between registered problems by health professionals andpatients’ self-reported problems, whereas the medical group had several negative correlations.Conclusion. A functioning assessment resulted in a care plan that not only was broader and more complete but also reflectedthe patients’ self-reported problems more closely than a medical assessment, without a loss of focus on medical problems.Relevance to clinical practice. This study has shown that some health problems remain unnoticed by a medical assessmentalone, which is especially important for the chronically ill. A functioning assessment provides a strong foundation for identifyingall relevant information related to health.
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Enhancing communication performance skills may help children with Down Syndrome (DS) to expand their opportunities for participation in daily life. It is a clinical challenge for speech-language pathologists (SLP) to disentangle various mechanisms that contribute to the language and communication problems that children with DS encounter. Without clarity of different levels of functioning, appropriate interventions may be poorly conceived or improperly implemented. In the present study, the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) framework was used to classify contributing factors to communication performance in a multiple case study of six young children with DS. Within a comprehensive assessment, we identified individual and environmental facilitators and barriers, leading to an integrative profile of communication performance (IPCP) for each child. Whereas these six children shared a developmental, and/or expressive vocabulary age and/or level of communicative intent, the children faced similar but also unique personal and environmental factors that play an important role in their communication performance. Our data reveal that a combination of different factors may lead to the same language outcomes and vice versa, based on a unique pattern of interdependency of ICF-CY domains. Planning SLP interventions for enhancing communication performance in children with DS should therefore be based on a comprehensive view on the competences and limitations of every individual child and its significant communication partners. This evaluation should address facilitators and barriers in body functions, structures, activities, participation and environment, with a specific focus on individual strengths. The ICF-CY provides a useful framework for constructing an IPCP that serves this purpose.
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Abstract: Disability is associated with lower quality of life and premature death in older people. Therefore, prevention and intervention targeting older people living with a disability is important. Frailty can be considered a major predictor of disability. In this study, we aimed to develop nomograms with items of the Tilburg Frailty Indicator (TFI) as predictors by using cross-sectional and longitudinal data (follow-up of five and nine years), focusing on the prediction of total disability, disability in activities of daily living (ADL), and disability in instrumental activities of daily living (IADL). At baseline, 479 Dutch community-dwelling people aged 75 years participated. They completed a questionnaire that included the TFI and the Groningen Activity Restriction Scale to assess the three disability variables. We showed that the TFI items scored different points, especially over time. Therefore, not every item was equally important in predicting disability. ‘Difficulty in walking’ and ‘unexplained weight loss’ appeared to be important predictors of disability. Healthcare professionals need to focus on these two items to prevent disability. We also conclude that the points given to frailty items differed between total, ADL, and IADL disability and also differed regarding years of follow-up. Creating one monogram that does justice to this seems impossible.
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BACKGROUND: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available.OBJECTIVE: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases.DESIGN: A qualitative method.METHODS: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set.RESULTS: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the "Participation" and "Environmental Factors" components.CONCLUSION: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs.CLINICAL REHABILITATION IMPACT: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.
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Lipoedema is a painful non-pitting diffuse “fatty” swelling, usually confined to the legs, that occurs mainly in women. This scoping review aimed to provide an overview of the available research on the functioning of people with lipoedema, according to the International Classification of Functioning, Disability and Health (ICF) framework. Relevant publications and gray literature were retrieved until October 2022. The results sections of each publication were organized using a thematic framework approach. All included studies reported at least one outcome fitting within the domains of body functions and body structures, with most studies focusing on the categories of “sensation of pain”, “immunological system functions”, and “weight maintenance functions”. The ICF domains of activities and participation and environmental factors were mentioned in a small number of the included studies (17 and 13%, respectively), while the domain of personal factors was studied in half of the included studies. In conclusion, the emphasis of lipoedema research is on its description from a disorder-oriented point of view in the form of body functions and body structures, with a lack of information about the other domains of functioning.
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Background: A hematopoietic stem cell transplantation (HSCT) has a major impact on the functioning and perceived quality of life of patients. To describe the functioning of patients, a preliminary set of 53 categories of the International Classification of Functioning, Disability and Health (ICF) as relevant for HSCT patients has been selected earlier by a Delphi study. For the implementation of this preliminary ICF core set for patients after HSCT in clinical practice, a feasibility study was requested.Methods: A feasibility study was conducted in an explanatory mixed-methods research design. Qualitative data were collected cross-sectionally by semi-structured interviews based on specific topics related to feasibility regarding the use of the preliminary ICF core set for HSCT patients from the perspective of nurses (five in ICF-trained nurses and five regular, untrained, nurses). Quantitative data, were collected longitudinally by using a mobile health application based on ICF in which the ICF trained nurses registered HSCT patients ' functioning.Results: Qualitative analysis indicated that using the preliminary ICF core set is practical and acceptable for providing information about the functioning of HSCT patients from the perspective of nurses. In addition, nurses indicated a demand for this information due to its impact on multidisciplinary meetings and clinical decision-making by involving relevant aspects of the functioning of patients. Management support, trained staff, and designated time to focus on functioning are mentioned as requirements for successful implementation. Quantitative analysis demonstrated that the most used 30% (n = 17) ICF categories are included in the preliminary ICF core set for HSCT patients (n = 24). Energy (b130) was the most used ICF category. Family relationships (d760) was the most frequently and highly positively associated ICF category.Conclusions: From the perspective of nurses, the preliminary ICF core set for HSCT patients is feasible and relevant in gaining information regarding functioning. Applying this preliminary ICF core set for HSCT patients in the anamnesis and the nursing consultations contributes to this information. Further research is needed to look at the perspective of other professionals and HSCT patients themselves.
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L2 pronunciation training should unequivocally be linked to complex daily life experiences (Derwing 2017). Each client comes from a different background, participates in a different environmental context and engages in different activities within those contexts (Threats 2008). This is a particularly challenging aspect in the L2 practice (Derwing 2017). The International Classification of Functioning, Disability and Health, also known as the ICF-Model (WHO 2001, 2013), offers a conceptual framework that acknowledges the intricate dimensions of human functioning and incorporates personal and contextual factors that can influence participation in daily live (Heerkens and de Beer 2007; Ma, Threats, and Worrall 2008). This paper provides an exploration of the application of this model to pronunciation and intelligibility difficulties in L2 learning. We apply the model to a specific L2 learner, Mahmout and demonstrate how its use allows for consideration of factors much broader than the phonological or phonetic challenges Mahmout faces. Mahmout must be able to generalize that what he has learned into functional communicative competences to improve his participation. The ICF-model (WHO 2001, 2013) is used globally in a broad array of healthcare professions, including Speech and Language Therapists (SLT’s). Yet, it is not a customary tool, nor probably an obvious one, used by L2-professionals (Blake and McLeod 2019). Of course, our goal is not to classify pronunciation problems of L2 learners as disabilities. The model proves a useful tool to view the individual L2 learner as a whole, and part of a larger system. It may allow L2 professionals to tailor their intervention to the individual’s needs and situation and will consequently be able to establish priorities in instruction to enable appropriate goal setting for each individual (Blake and McLeod 2019). It allows identification of influencing barriers or facilitating factors within the stagnation or improvement of pronunciation (Blake and McLeod 2019; Howe 2008).
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Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
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