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Structured Water Dance Intervention (SWAN) for adults with profound intellectual and multiple disabilities: study protocol.

ABSTRACT: Background:People 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. Objective:Structured 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. Methods:The 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. Conclusions:This 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.

SUBMITTER: Lundqvist LO

PROVIDER: S-EPMC7390855 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Structured Water Dance Intervention (SWAN) for adults with profound intellectual and multiple disabilities: study protocol.

Lundqvist Lars-Olov LO Matérne Marie M Granberg Anette A Frank André A Arvidsson Patrik P Duberg Anna A

Heliyon 20200725 7

<h4>Background</h4>People 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.<h4>Objective</h4>Structured Water Dance Intervention (SWAN) is a new method developed to fill this gap. This paper reports a protocol for an intervention study which aims ...[more]

PMID: 32760817

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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.

Project description:BACKGROUND:While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. We conducted a process evaluation of the implementation of 'Care for Participation+' (CFP+), a new intervention targeting the attitudes of direct support professionals (DSPs) toward the participation of adults with VSPID, within a residential facility in the Netherlands. METHODS:CFP+ was inspired by the Boston Psychiatric Rehabilitation Approach and adapted by adopting a new definition and operationalization of the concept of participation for adults with VSPID. Following systematic training, 16 DSPs of adults with VSPID were able to apply key elements of CFP+ to explore diverse roles and activities for this population, facilitating their self-management, teaching them necessary skills for participation, and organizing support. Our process evaluation entailed an investigation of the delivered dose, reach, fidelity, and adaptation of CFP+ during and after the CFP+ intervention. We also evaluated the mechanisms of impact and context using questionnaires, assignments, documentation, interviews, and a logbook. RESULTS:The intended dose, reach, and fidelity relating to the implementation of CFP+ were not achieved. Despite this fact, an assessment of the mechanisms of impact indicated that assignments of CFP+ were well (75%) or reasonably well (17%) understood by DSPs. CFP+ was applied by DSPs to stimulate self-management (83% of DSPs), new activities (100%), enhanced involvement in existing activities (67%) and to explore new roles (50%) for adults with VSPID. A negative contextual factor mentioned by the trainer and manager was the DSPs' lack of commitment to the training program. Another negative contextual factor mentioned by DSPs was the lack of time for implementing CFP+. CONCLUSIONS:CFP+ provides new opportunities to improve the participation of adults with VSPID. Despite the non-optimal conditions for implementing CFP+ and the DSPs' general reluctance to apply the new intervention, some have actively used CFP+ within the residential facility. Future studies should focus on the outcomes of CFP+ regarding attitudinal changes among DSPs relating to the participation of adults with VSPID and their quality of life.

Dataset Information

Structured Water Dance Intervention (SWAN) for adults with profound intellectual and multiple disabilities: study protocol.

Publications

Structured Water Dance Intervention (SWAN) for adults with profound intellectual and multiple disabilities: study protocol.

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