Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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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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A significant proportion of adolescents with chronic musculoskeletal pain (CMP) experience difficulties in physical functioning, mood and social functioning, contributing to diminished quality of life. Generalized joint hypermobility (GJH) is a risk factor for developing CMP with a striking 35-48% of patients with CMP reporting GJH. In case GJH occurs with one or more musculoskeletal manifestations such as chronic pain, trauma, disturbed proprioception and joint instability, it is referred to as generalized hypermobility spectrum disorder (G-HSD). Similar characteristics have been reported in children and adolescents with the hypermobile Ehlers-Danlos Syndrome (hEDS). In the management of CMP, a biopsychosocial approach is recommended as several studies have confirmed the impact of psychosocial factors in the development and maintenance of CMP. The fear-avoidance model (FAM) is a cognitive-behavioural framework that describes the role of pain-related fear as a determinant of CMP-related disability. Pubmed was used to identify existing relevant literature focussing on chronic musculoskeletal pain, generalized joint hypermobility, pain-related fear and disability. Relevant articles were cross-referenced to identify articles possibly missed during the primary screening. In this paper the current state of scientific evidence is presented for each individual component of the FAM in hypermobile adolescents with and without CMP. Based on this overview, the FAM is proposed explaining a possible underlying mechanism in the relations between GJH, pain-related fear and disability. It is assumed that GJH seems to make you more vulnerable for injury and experiencing more frequent musculoskeletal pain. But in addition, a vulnerability for heightened pain-related fear is proposed as an underlying mechanism explaining the relationship between GJH and disability. Further scientific confirmation of this applied FAM is warranted to further unravel the underlying mechanism. In explaining disability in individuals with G-HSD/hEDS, it is important to focus on both the physical components related to joint hypermobility, in tandem with the psychological components such as pain-related fear, catastrophizing thoughts and generalized anxiety.
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Stimulating patients to approach their pain from a biopsychosocial perspective is central to chronic pain rehabilitation. However, conversations between patients and their healthcare professionals about the social and psychological factors that may contribute to the continuation of pain and disability can be challenging. The current scientific literature does not sufficiently pinpoint the difficulties in patient–practitioner interaction on chronic pain, and it falls short of answering the question of how a joint exploration of the social and psychological factors that might be involved in the patient’s pain and evolving disability can be enhanced. In this theoretical article, we introduce discursive psychology as a potentially valuable research perspective to gain a better understanding of the difficulties in patient–practitioner interaction in the context of chronic pain rehabilitation. Discursive psychology focuses on features of people’s talk (e.g. that of patients and practitioners) and is concerned with the social practices that people perform as part of a specific interactional context. In this paper, we provide an introduction to the main theoretical notions of discursive psychology. We illustrate how discursive psychological analyses can inform our understanding of the specific sensitivities in conversations between patients with chronic pain and their practitioners. Finally, we address how a better understanding of these sensitivities offers a gateway towards improving these conversations. Een belangrijk principe in revalidatie bij chronische pijn is de benadering van de pijn vanuit een biopsychosociaal perspectief. Het blijkt echter een uitdaging voor patiënten en behandelaars om de sociale en psychologische factoren die een rol spelen bij chronische pijn te bespreken. In de huidige wetenschappelijke literatuur is hier nog niet voldoende aandacht voor; en wordt geen perspectief geboden voor verbetering van de gezamenlijke verkenning van sociale en psychologische factoren. In dit theoretische artikel introduceren we discursieve psychologie als een mogelijk waardevol onderzoeksperspectief om een beter begrip tot stand te brengen van de complexiteit van interactie in de context van chronische pijn revalidatie. Discursieve psychologie richt zich op kenmerken van interactie, in het bijzonder de sociale praktijken die tot stand worden gebracht binnen een specifieke interactionele context. We beschrijven de belangrijkste theoretische principes van discursieve psychologie en illustreren hoe een DP analyse licht kan werpen op de specifieke gevoeligheden in conversaties tussen patiënten met chronische pijn en hun behandelaars. Tot slot bespreken we hoe een beter begrip van deze gevoeligheden een ingang biedt tot het verbeteren van deze conversaties.
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BACKGROUND: In typically developing children, participation in sports has been proven to be positively correlated to both physical and psychosocial health outcomes. In children and adolescents with a physical disability or chronic disease participation in both recreational and competitive sports is often reduced, while for this population an active lifestyle may be even more important in reaching optimal levels of physical and psychosocial health. Therefore, the aim of the Health in Adapted Youth Sports (HAYS) Study is to determine both negative and positive effects of sports on children and adolescents with a chronic disease or physical disability. METHODS: In this cross-sectional study differences will be compared in regards to physical and psychosocial health, cognitive functioning, school performance, daily physical activity and injuries between children and adolescents with a chronic disease or physical disability who participate in sports and those who do not. Children and adolescents, both ambulatory and wheelchair dependent, in the age of 10-19 years with a physical disability or chronic disease will be included. "Sports" is defined as participation in an organized sport at least two times a week for a duration of 3 months or more prior to the assessment. Parametric and non-parametric statistics will be used to determine the differences between the two groups. DISCUSSION: This study provides insight in the effects of sports participation in relation to health, psychosocial functioning, physical activity and school performance in children and adolescents (10-19 years) with a chronic disease or physical disability. Results will guide healthcare professionals working with these children to better guide this population in reaching optimal levels of health and physical activity levels.
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PURPOSE: The aim of this study was to determine changes in physical activity, nutrition, sleep behaviour and body composition in wheelchair users with a chronic disability after 12 weeks of using the WHEELS mHealth application (app).METHODS: A 12-week pre-post intervention study was performed, starting with a 1-week control period. Physical activity and sleep behaviour were continuously measured with a Fitbit charge 3. Self-reported nutritional intake, body mass and waist circumference were collected. Pre-post outcomes were compared with a paired-sample t-test or Wilcoxon signed-rank test. Fitbit data were analysed with a mixed model or a panel linear model. Effect sizes were determined and significance was accepted at p < .05. RESULTS: Thirty participants completed the study. No significant changes in physical activity (+1.5 √steps) and sleep quality (-9.7 sleep minutes; -1.2% sleep efficiency) were found. Significant reduction in energy (-1022 kJ, d = 0.71), protein (-8.3 g, d = 0.61) and fat (-13.1 g, d = 0.87) intake, body mass (-2.2 kg, d = 0.61) and waist circumference (-3.3 cm, d = 0.80) were found. CONCLUSION: Positive changes were found in nutritional behaviour and body composition, but not in physical activity and sleep quality. The WHEELS app seems to partly support healthy lifestyle behaviour.Implications for RehabilitationHealthy lifestyle promotion is crucial, especially for wheelchair users as they tend to show poorer lifestyle behaviour despite an increased risk of obesity and comorbidity.The WHEELS lifestyle app seems to be a valuable tool to support healthy nutrition choices and weight loss and to improve body satisfaction, mental health and vitality.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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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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ABSTRACT Objective: To examine the associations between individual chronic diseases and multidimensional frailty comprising physical, psychological, and social frailty. Methods: Dutch individuals (N = 47,768) age ≥ 65 years completed a general health questionnaire sent by the Public Health Services (response rate of 58.5 %), including data concerning self-reported chronic diseases, multidimensional frailty, and sociodemographic characteristics. Multidimensional frailty was assessed with the Tilburg Frailty Indicator (TFI). Total frailty and each frailty domain were regressed onto background characteristics and the six most prevalent chronic diseases: diabetes mellitus, cancer, hypertension, arthrosis, urinary incontinence, and severe back disorder. Multimorbidity was defined as the presence of combinations of these six diseases. Results: The six chronic diseases had medium and strong associations with total ((f2 = 0.122) and physical frailty (f2 = 0.170), respectively, and weak associations with psychological (f2 = 0.023) and social frailty (f2 = 0.008). The effects of the six diseases on the frailty variables differed strongly across diseases, with urinary incontinence and severe back disorder impairing frailty most. No synergetic effects were found; the effects of a disease on frailty did not get noteworthy stronger in the presence of another disease. Conclusions: Chronic diseases, in particular urinary incontinence and severe back disorder, were associated with frailty. We thus recommend assigning different weights to individual chronic diseases in a measure of multimorbidity that aims to examine effects of multimorbidity on multidimensional frailty. Because there were no synergetic effects of chronic diseases, the measure does not need to include interactions between diseases.
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Background: Little evidence is available about how sports participation influences psychosocial health and quality of life in children and adolescents with a disability or chronic disease. Therefore, the aim of the current study is to assess the association of sports participation with psychosocial health and with quality of life, among children and adolescents with a disability. Methods: In a cross-sectional study, 195 children and adolescents with physical disabilities or chronic diseases (11% cardiovascular, 5% pulmonary, 8% metabolic, 8% musculoskeletal/orthopaedic, 52% neuromuscular and 9% immunological diseases and 1% with cancer), aged 10–19 years, completed questionnaires to assess sports participation, health-related quality of life (DCGM-37), self-perceptions and global self-worth (SPPC or SPPA) and exercise self-efficacy. Results: Regression analyses showed that those who reported to participate in sports at least twice a week had more beneficial scores on the various indicators compared to their peers who did not participate in sport or less than twice a week. Those participating in sports scored better on all scales of the DCGM-37 scale, on the scales for feelings of athletic competence and children but not adolescents participating in sports reported greater social acceptance. Finally, we found a strong association between sport participation and exercise self-efficacy. Conclusions: This study provides the first indications that participating in sports is beneficial for psychosocial health among children and adolescents with a disability. However, more insight is needed in the direction of the relationships.
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