Description: The Neck Pain and Disability Scale (NPDS or NPAD) is a questionnaire aiming to quantify neck pain and disability.1 It is a patient-reported outcome measure for patients with any type of neck pain, of any duration, with or without injury.1,2 It consists of 20 items: three related to pain intensity, four related to emotion and cognition, four related to mobility of the neck, eight related to activity limitations and participation restrictions and one on medication.1,3 Patients respond to each item on a 0 to 5 visual analogue scale of 10 cm. There is also a nine-item short version.4 Feasibility: The NPDS is published and available online (https://mountainphysiotherapy.com.au/wp-content/uploads/2016/08/Neck-Pain-and-Disability-Scale.pdf).1 The NPDS is an easy to use questionnaire that can be completed within 5 to 8 minutes.1,5 There is no training needed to administer the instrument but its validity is compromised if the questionnaire must be read to the patient.2 Higher scores indicate higher severity (0 for normal functioning to 5 for the worst possible situation ‘your’ pain problem has caused you).2 The total score is the sum of scores on the 20 items (0 to 100).1 The maximum acceptable number of missing answers is three (15%).4 Two studies found a minimum important change of 10 points (sensitivity 0.93; specificity 0.83) and 11.5 points (sensibility 0.74; specificity 0.70), respectively.6,7 The NPDS is available in English, Dutch, Finnish, French, German, Italian, Hindi, Iranian, Korean, Turkish, Japanese and Thai. Reliability and validity: Two systematic reviews have evaluated the clinimetric properties of 11 of the translated versions.5,8 The Finnish, German and Italian translations were particularly recommended for use in clinical practice. Face validity was established and content validity was confirmed by an adequate reflection of all aspects of neck pain and disability.1,8 Regarding structural validity, the NPDS is a multidimensional scale, with moderate evidence that the NPDS has a three-factor structure (with explained variance ranging from 63 to 78%): neck dysfunction related to general activities; neck pain and neck-specific function; and cognitive-emotional-behavioural functioning. 4,5,9 A recent overview of four systematic reviews found moderate-quality evidence of high internal consistency (Cronbach’s alphas ranging from 0.86 to 0.93 for the various factors).10 Excellent test-retest reliability was found (ICC of 0.97); however, the studies were considered to be of low quality.3,10 Construct validity (hypotheses-testing) seems adequate when the NPDS is compared with the Neck Disability Index and the Global Assessment of Change with moderate to strong correlations (r = 0.52 to 0.86), based on limited moderate-quality studies.3,11,12 One systematic review reported good responsiveness to change in patients (r = 0.59).12
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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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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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Research on follow-up outcomes of systemic interventions for family members with an intellectual disability is scarce. In this study, short-term and long-term follow-up outcomes of multisystemic therapy for adolescents with antisocial or delinquent behaviour and an intellectual disability (MST-ID) are reported. In addition, the role of parental intellectual disability was examined. Outcomes of 55 families who had received MST-ID were assessed at the end of treatment and at 6-month, 12-month and 18-month follow-up. Parental intellectual disability was used as a predictor of treatment outcomes. Missing data were handled using multiple imputation. Rule-breaking behaviour of adolescents declined during treatment and stabilized until 18 months post-treatment. The presence or absence of parental intellectual disability did not predict treatment outcomes. This study was the first to report long-term outcomes of MST-ID. The intervention achieved similar results in families with and without parents with an intellectual disability.
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Background: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
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Background: There are indications that older adults who suffer from poor balance have an increased risk for adverse health outcomes, such as falls and disability. Monitoring the development of balance over time enables early detection of balance decline, which can identify older adults who could benefit from interventions aimed at prevention of these adverse outcomes. An innovative and easy-to-use device that can be used by older adults for home-based monitoring of balance is a modified bathroom scale. Objective: The objective of this paper is to study the relationship between balance scores obtained with a modified bathroom scale and falls and disability in a sample of older adults. Methods: For this 6-month follow-up study, participants were recruited via physiotherapists working in a nursing home, geriatricians, exercise classes, and at an event about health for older adults. Inclusion criteria were being aged 65 years or older, being able to stand on a bathroom scale independently, and able to provide informed consent. A total of 41 nursing home patients and 139 community-dwelling older adults stepped onto the modified bathroom scale three consecutive times at baseline to measure their balance. Their mean balance scores on a scale from 0 to 16 were calculated—higher scores indicated better balance. Questionnaires were used to study falls and disability at baseline and after 6 months of follow-up. The cross-sectional relationship between balance and falls and disability at baseline was studied using t tests and Spearman rank correlations. Univariate and multivariate logistic regression analyses were conducted to study the relationship between balance measured at baseline and falls and disability development after 6 months of follow-up.
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Background. Quality of life is an important health outcome for older persons. It predicts the adverse outcomes of institutionalization and premature death. The aim of this cross-sectional study was to determine the influence of both disability in activities of daily living (ADL) and instrumental activities of daily living (IADL) on physical and mental dimensions of quality of life. Methods. A total of 377 Dutch people aged 75 years and older completed a web-based questionnaire. This questionnaire contained the Groningen Activity Restriction Scale (GARS) for measuring ADL and IADL and the Short-Form Health Survey (SF-12) for measuring quality of life. The SF-12 distinguishes two dimensions of quality of life, a physical and mental dimension.
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Background Little is known about the nature and reactions to sexual abuse of children with intellectual disability (ID). The aim was to fill this gap. Method Official reports of sexual abuse of children with ID in state care were examined (N = 128) and compared with children without ID (N = 48). Results Clear signs of penetration or genital touching by male (adolescent) peers or (step/foster) fathers were found in most ID reports. Victims often received residential care and disclosed themselves. Type of perpetrator seemed to affect the nature and reaction to the abuse. Cases of children with and without ID seemed to differ in location and reports to police. Conclusions Screening of (foster)homes seems crucial. Residential facilities should find a balance between independence of children and protection. Care providers should be trained in addressing sexual issues and sexual education, accounting for different types of perpetrators (peers/adults). Uniform reporting guidelines are needed.
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The purpose of this article is the presentation of a multidimensional guideline for the diagnosis of anxiety and anxiety-related behavior problems in people with intellectual disability (ID), with a substantial role for the nurse in this diagnostic process. DESIGN AND METHODS: The guideline is illustrated by a case report of a woman with ID with severe problems. FINDINGS: It appears that a multidimensional diagnostic approach involving multidisciplinary team efforts can result in a more accurate diagnosis and improved subsequent treatment. PRACTICE IMPLICATIONS: Nurses should be engaged in the diagnostic process because of their ability to make direct observations and to actively participate in carrying out all parts of the guideline.
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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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