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Health professionals' experiences with the PEDI-UG

BackgroundThe Uganda version of Pediatric Evaluation of Disability Inventory (PEDI-UG) was culturally adapted and validated from the PEDI-US, a tool used to evaluate the functional capability of children with or without disability aged 6 months to 7.5 years in the areas of self-care, mobility and social domains. A group of Ugandan occupational therapists with experience of using PEDI-UG participated in this study to explore the question: What do Ugandan occupational therapists say about the utility and value of the PEDI-UG for children with disabilities?MethodsA qualitative research design was chosen to explore the participants' viewpoints concerning the utility and value of the PEDI-UG for children with disabilities. Purposive sampling was used to recruit health professionals for the focus group discussions. Focus group discussions were carried out with 18 occupational therapists and nurses. Thematic analysis was performed to establish patterns and themes.ResultsSeveral challenges concerning the contextual use of PEDI-UG were reported. For example, PEDI-UG being culturally adapted in two languages (English and Luganda) makes it difficult for health professionals to use it for children whose caregivers are non-English or non-Luganda speakers. In addition, participants reported adapting the way they asked the assessment questions, struggling with how they interpreted the scores and observing the child's skills if required during PEDI-UG interviews with caregivers.ConclusionsThe findings of this study suggest that health professionals are challenged with the use of the PEDI-UG assessment in diverse cultural contexts and/or languages. These challenges are important considerations for the PEDI-UG translation in different Uganda cultural languages and training health professionals on the use and value of PEDI-UG for children with disabilities.

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Health professionals' experiences with the PEDI-UG

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Cervical dystonia: Disability and the value of physical therapy

Cervical dystonia (CD) is a neurological movement disorder characterized by involuntary muscle contractions causing abnormal postures and/or twisting movements of the head and neck.Patients may also experience non-motor symptoms including pain, anxiety and depression. The main treatment option is botulinum toxin (BoNT) injections in affected muscles to improve head postures and reduce pain. In addition to BoNT treatment, patients are often referred for physical therapy (PT), but there is little evidence regarding the long-term effectiveness.Despite remarkable improvements during the last decades, there are still many unmet needs that remain open in the treatment of cervical dystonia (CD). The first goal of this thesis was to assess clinical issues in BoNT treatment that need further improvement and to define clinical recommendations for clinicians. The second goal was to explore which determinants play an important role in disability of CD patients and the third goal was to develop a specialized PT program and to evaluate its effects on disability.Results showed that BoNT treatment can be further improved despite all the evidence for its effectiveness. Further research is needed towards optimal treatment intervals, dose equivalence between different BoNT formulations, the use of supportive techniques like electromyography or ultrasound and managing side effects. Secondly, we found that psychological factors are important determinants of disability. Finally, we found that PT is a valuable addition to BoNT treatment to improve disability and pain. Based on these findings, a multidisciplinary treatment approach to further improve the treatment and quality of life for CD patients is recommended.

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Cervical dystonia: Disability and the value of physical therapy

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Physical performance characteristics related to disability in older persons: A systematic review

Progressive disability develops with older age in association with underlying disease, comorbidity and frailty. Physical performance characteristics are important to improve the physical condition of older persons and therefore may be able to prevent or delay the onset of (progressive) disability. However lack of understanding of the physiology and etiology of functional decline leading to disability causes a problem in the development of effective preventive interventions. The aim of the present review is to determine which physical performance characteristics are determinants of disability in the older general population.

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Physical performance characteristics related to disability in older persons: A systematic review

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Physiotherapy treatment approaches for survivors of critical illness

Purpose: The aim of this study was to develop practical recommendations for physiotherapy for survivors of critical illness after hospital discharge. Methods: A modified Delphi consensus study was performed. A scoping literature review formed the basis for three Delphi rounds. The first round was used to gather input from the panel to finalize the survey for the next two rounds in which the panel was asked to rank each of the statements on an ordinal scale with the objective to reach consensus. Consensus was defined as a SIQR of ≤ 0.5. Ten Dutch panelists participated in this study: three primary care physiotherapists, four intensive care physiotherapists, one occupational therapist, one ICU-nurse and one former ICU-patient. All involved professionals have treated survivors of critical illness. Our study was performed in parallel with an international Delphi study with hospital-based health-care professionals and researchers. Results: After three Delphi rounds, consensus was reached on 95.5% of the statements. This resulted in practical recommendations for physiotherapy for critical illness survivors in the primary care setting. The panel agreed that the handover should include information on 14 items. Physiotherapy treatment goals should be directed toward improvement of aerobic capacity, physical functioning, activities in daily living, muscle strength, respiratory and pulmonary function, fatigue, pain, and health-related quality of life. Physiotherapy measurements and interventions to improve these outcomes are suggested. Conclusion: This study adds to the knowledge on post-ICU physiotherapy with practical recommendations supporting clinical decision-making in the treatment of survivors of critical illness after hospital discharge.

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Physiotherapy treatment approaches for survivors of critical illness

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Informal social support for families with children with an intellectual disability in Karachi, Pakistan

Background: Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well documented in Pakistan. Methods and procedures: Pakistan, which was conducted in Karachi, Pakistan, followed participatory action research, in which the researcher and participants examined their existing experiences of informal social support and then created, implemented, and evaluated actions to strengthen this informal social support. A total of five families (n = 25) participated in the study. These participating families comprise parents, siblings, and significant others, i.e., aunts, uncles, and grandparents, living with the child with ID. Families with children with ID were selected through a school for children with ID who are under 12 years old. This qualitative action research was conducted in two distinct parts, i.e., a) exploratory part and b) action part. This paper presents the findings of the first exploratory part of the study. Aim: The exploratory phase aimed to explore and examine the experiences and challenges families may experience with informal social support while caring for a child with an intellectual disability in Karachi, Pakistan. Findings: Parents often sacrifice their personal needs and aspirations for their children, leading to decreased tolerance and anxiety. Lack of communication, support, and assistance from family members is another significant issue. Stigmatisation and discrimination from school, relatives, and friends can cause depression and distress. The study emphasises the need for a unified and coordinated approach to support and care. Religious beliefs, siblings, and close friends provide comfort and well-being. When parents manage to connect with similar families, they have the opportunity to express a collective commitment to caregiving. Conclusion: To strengthen the situation, families propose enhancing intimacy and competency within homes and taking action at the governmental level. Governments must provide appropriate services, such as nurses supporting families, support groups, and religious traditions, to promote acceptance and holistic development for intellectually disabled children.

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Informal social support for families with children with an intellectual disability in Karachi, Pakistan

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Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community

Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.

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Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community

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Unravelling the potential mechanisms behind hospitalization-associated disability in older patients

BACKGROUND: Over 30 % of older patients experience hospitalization-associated disability (HAD) (i.e., loss of independence in Activities of Daily Living (ADLs)) after an acute hospitalization. Despite its high prevalence, the mechanisms that underlie HAD remain elusive. This paper describes the protocol for the Hospital-Associated Disability and impact on daily Life (Hospital-ADL) study, which aims to unravel the potential mechanisms behind HAD from admission to three months post-discharge.METHODS/DESIGN: The Hospital-ADL study is a multicenter, observational, prospective cohort study aiming to recruit 400 patients aged ≥70 years that are acutely hospitalized at departments of Internal Medicine, Cardiology or Geriatrics, involving six hospitals in the Netherlands. Eligible are patients hospitalized for at least 48 h, without major cognitive impairment (Mini Mental State Examination score ≥15), who have a life expectancy of more than three months, and without disablement in all six ADLs. The study will assess possible cognitive, behavioral, psychosocial, physical, and biological factors of HAD. Data will be collected through: 1] medical and demographical data; 2] personal interviews, which includes assessment of cognitive impairment, behavioral and psychosocial functioning, physical functioning, and health care utilization; 3] physical performance tests, which includes gait speed, hand grip strength, balance, bioelectrical impedance analysis (BIA), and an activity tracker (Fitbit Flex), and; 4] analyses of blood samples to assess inflammatory and metabolic markers. The primary endpoint is additional disabilities in ADLs three months post-hospital discharge compared to ADL function two weeks prior to hospital admission. Secondary outcomes are health care utilization, health-related quality of life (HRQoL), physical performance tests, and mortality. There will be at least five data collection points; within 48 h after admission (H1), at discharge (H3), and at one (P1; home visit), two (P2; by telephone) and three months (P3; home visit) post-discharge. If the patient is admitted for more than five days, additional measurements will be planned during hospitalization on Monday, Wednesday, and Friday (H2).DISCUSSION: The Hospital-ADL study will provide information on cognitive, behavioral, psychosocial, physical, and biological factors associated with HAD and will be collected during and following hospitalization. These data may inform new interventions to prevent or restore hospitalization-associated disability.

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Unravelling the potential mechanisms behind hospitalization-associated disability in older patients

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parents' role in enabling the participation of their child with a physical disability

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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parents' role in enabling the participation of their child with a physical disability

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The body can not be thought: design practice at the intersection of human-computer integration and critical disability studies to develop new paradigms for health and well-being.

This paper explores the intersection of Human-Comput- er Integration (HInt) and Critical Disability Studies (CDS) to explore how a posthumanistic epistemology in design can produce knowledge and know-how for the application do- mains of Health and Well-being. To use disability as a catalyst for innovation, a rethinking in the philosophy of sciences is necessary to establish knowledge production that emerges from new fluid politics that operate in ‘composition’ instead of ‘organization’. By placing an emphasis on nomadic practic- es that move beyond fixed borders, the encounters between Disability Studies or Human-Computer Integration can pro- duce situated, embodied and contingent design knowledge that study deviant and complex embodiment, and the kinds of alterations of human characteristics and abilities through technology. The first section of this paper explores the re- thinking in the philosophy of sciences. The second section ar- gues for a posthumanistic epistemology in design, which can be seen as the perfect way to produce situated, embodied and contingent design knowledge on the intersection of HInt and CDS. The final section of this paper highlights the poten- tial for the disciplines of Somatechnics and Soma Design to engage in each other’s body of knowledge to produce trans- formative knowledge through a shared focus on deviant em- bodiment and disability. The takeaway message of this paper is that the intersection of HInt and CDS potentially leads to new – otherwise overlooked - insights on the human-technol- ogy relationship, and therefore can take part in the historical strive for man-machine symbiosis. The posthumanist episte- mology allows for alternative ways of thinking that move be- yond the current Humanist perspective, and builds on a plu- ral, relational and expansive foundation for the development of design practices that catalyze innovation in the application domains of Health and Well-being.

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Health professionals' experiences with the PEDI-UG

Cervical dystonia: Disability and the value of physical therapy

Physical performance characteristics related to disability in older persons: A systematic review

Physiotherapy treatment approaches for survivors of critical illness

Informal social support for families with children with an intellectual disability in Karachi, Pakistan

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community

Unravelling the potential mechanisms behind hospitalization-associated disability in older patients

parents' role in enabling the participation of their child with a physical disability

The body can not be thought: design practice at the intersection of human-computer integration and critical disability studies to develop new paradigms for health and well-being.

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Health professionals' experiences with the PEDI-UG

Cervical dystonia: Disability and the value of physical therapy

Physical performance characteristics related to disability in older persons: A systematic review

Physiotherapy treatment approaches for survivors of critical illness

Informal social support for families with children with an intellectual disability in Karachi, Pakistan

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community

Unravelling the potential mechanisms behind hospitalization-associated disability in older patients

parents' role in enabling the participation of their child with a physical disability

The body can not be thought: design practice at the intersection of human-computer integration and critical disability studies to develop new paradigms for health and well-being.