Parents' Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities.
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ABSTRACT:
SUBMITTER: Neyroud MC
PROVIDER: S-EPMC8471413 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundParents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.MethodWe conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.ResultsParents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.ConclusionsSuggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.
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Project description:Pain is a frequent issue in children with profound intellectual and multiple disabilities (PIMD). Its identification and treatment can prove highly challenging for primary care physicians, mainly because of the children's limited communication abilities. We used an online survey to explore paediatricians' views regarding the experience and management of pain in children with PIMD and invited 480 professionals working in the canton of Vaud, Switzerland, to take part. We received 121 responses (participation rate 25.5%). A large majority of respondents provided care to children with PIMD. All paediatricians considered that these children feel pain at least as much as typically developing children. However, paediatricians had mixed views on their tolerance to pain. More than 90% held the view that their pain is under-assessed and undertreated. The principal barriers they reported to appropriate management were communication limitations with the child, difficulties in pain assessment, lack of knowledge about children with disabilities and lack of experience. Paediatricians have complex opinions regarding how children with PIMD experience pain and how to manage this problem. Professional education and training on the specificities of children with PIMD, including how to address their pain, seem necessary to foster paediatricians' ability and confidence in approaching this complex issue.
| S-EPMC8004709 | biostudies-literature
Project description:BackgroundOlfaction provides information on very important dimensions of the environment; however the olfactory abilities of children and young people with profound intellectual and multiple disabilities (PIMD) remain largely unknown. This within-subjects study explores olfactory detection abilities in children with PIMD.MethodTwenty-two children and young people with PIMD (7-18 years) were presented with 18 medium intensity odours and an odourless control stimulus. Odorants were presented one by one in a randomised order. The neutral stimulus was presented prior to each odorant. Participants' responses were measured using 21 behavioural indicators.ResultsResults show that participants make a clear distinction between odorous and neutral conditions, between food and non-food, and between pleasant and unpleasant odours. The detection abilities are manifested by several behaviours, in particular by the duration of the head alignment on the odorant.ConclusionsThis study shows that participants detect the stimuli and act differently depending on the category.
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Project description:Self-determination is a human right that people with profound intellectual and multiple disabilities (PIMD) risk not being granted. Exploration of such topics and research in general has traditionally not included people with PIMD as sources of knowledge; rather, the perspective of others has been sought. Ethnographic methods highlighting descriptions of lived experience have been argued as a way of including such individuals, producing knowledge building on the person's perspective. Exploring the human right to be self-determined through ethnographic approaches can bring novel ways of understanding the concept, both about how to listen and learn from such experiences, and about implications for understanding self-determination. All people have the potential for self-determination, by being understood through embodied communication in caring relationships. By fostering relations with people with PIMD in sensitive, ethical ways, and addressing their profound dependency, their self-determination can be realized. WHAT THIS PAPER ADDS: Attentive engagement with people with lived experience of profound intellectual and multiple disabilities can inform both researchers and clinicians on self-determination. Through real-life descriptions, self-determination is demonstrated to move beyond independence and choice-making.
| S-EPMC10084087 | biostudies-literature
Project description:Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers.
| S-EPMC8928810 | biostudies-literature
Project description:BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality's guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family's needs. The main question in the interviews was 'What was your experience with cooperation in the transition process, and what would you do to improve this process?' The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the 'housing waiting list', level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families' wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents' burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.
| S-EPMC7724626 | biostudies-literature
Project description:BackgroundPeople with profound intellectual and multiple disabilities (PIMD) have a combination of severe intellectual disability, extensive physical impairment, sensory impairments and medical health problems. There is, however, a lack of evidence-based physical and health-promoting interventions for people with PIMD.ObjectiveStructured Water Dance Intervention (SWAN) is a new method developed to fill this gap. This paper reports a protocol for an intervention study which aims to evaluate SWAN with regard to its effects on physiological, psychological and social health-related variables as well as its cost-effectiveness and potential for implementation in health care.MethodsThe evaluation of SWAN is performed in a multi-center randomized crossover study. Data is collected through cortisol measurement, physiological assessments, proxy ratings, video observations and interviews.ConclusionsThis is the first attempt to evaluate rigorously an innovative intervention for people with PIMD, a group that is rarely considered for health promotion interventions. This study will provide important information about the efficacy, cost-effectiveness and potential to implement SWAN in health care.
| S-EPMC7390855 | biostudies-literature
Project description:Communication interventions have broadened from dialogical meaning-making, assessment approaches, to remote-controlled interactive objects. Yet, interpretation of the mostly pre-or protosymbolic, distinctive, and idiosyncratic movements of children with intellectual disabilities (IDs) or profound intellectual and multiple disabilities (PIMD) using computer-based assistive technology (AT), machine learning (ML), and environment data (ED: location, weather indices and time) remain insufficiently unexplored. We introduce a novel behavior inference computer-based communication-aid AT system structured on machine learning (ML) framework to interpret the movements of children with PIMD/IDs using ED. To establish a stable system, our study aimed to train, cross-validate (10-fold), test and compare the classification accuracy performance of ML classifiers (eXtreme gradient boosting [XGB], support vector machine [SVM], random forest [RF], and neural network [NN]) on classifying the 676 movements to 2, 3, or 7 behavior outcome classes using our proposed dataset recalibration (adding ED to movement datasets) with or without Boruta feature selection (53 child characteristics and movements, and ED-related features). Natural-child-caregiver-dyadic interactions observed in 105 single-dyad video-recorded (30-hour) sessions targeted caregiver-interpreted facial, body, and limb movements of 20 8-to 16-year-old children with PIMD/IDs and simultaneously app-and-sensor-collected ED. Classification accuracy variances and the influences of and the interaction among recalibrated dataset, feature selection, classifiers, and classes on the pooled classification accuracy rates were evaluated using three-way ANOVA. Results revealed that Boruta and NN-trained dataset in class 2 and the non-Boruta SVM-trained dataset in class 3 had >76% accuracy rates. Statistically significant effects indicating high classification rates (>60%) were found among movement datasets: with ED, non-Boruta, class 3, SVM, RF, and NN. Similar trends (>69%) were found in class 2, NN, Boruta-trained movement dataset with ED, and SVM and RF, and non-Boruta-trained movement dataset with ED in class 3. These results support our hypotheses that adding environment data to movement datasets, selecting important features using Boruta, using NN, SVM and RF classifiers, and classifying movements to 2 and 3 behavior outcomes can provide >73.3% accuracy rates, a promising performance for a stable ML-based behavior inference communication-aid AT system for children with PIMD/IDs.
| S-EPMC9246124 | biostudies-literature
Project description:BackgroundKnowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD.MethodProfessionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature search to find information about the psychometric properties of the instruments that were identified in the survey.ResultsOf the participants, 78.1% used assessments that were not developed for people with PIMD. Documentation on psychometric properties was found for 8 out of 116 instruments.ConclusionsMost of the instruments in use were not designed for people with PIMD, and information about their quality is lacking. Guidelines are needed regarding the use and development of assessment methods for people with PIMD.
| S-EPMC8596661 | biostudies-literature
Project description:BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.
| S-EPMC10795329 | biostudies-literature