Support needs of older people with intellectual disabilities:An exploratory study among psychologists in the Netherlands

Background:  Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs.  Method:  A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities.  Results:  The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities.  Conclusions:  The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities

The usefulness of offering 24/7 online support within a wider mix of professional services for people with intellectual and developmental disabilities living independently : a qualitative, multiple case study

Service organizations for people with intellectual and developmental disabilities (IDD) increasingly use telecare applications to improve their services. This study explored the usefulness of offering the 24/7 online support service DigiContact within a broader mix of professional services for people with IDD living independently. We employed a qualitative multiple case study, in which the cases of nine online support users were reconstructed through semistructured interviews with both support users and their case workers. Thematic analysis showed that online support was used as an addition to regular onsite support to enable a more tailor-made delivery of professional supports. Online support can be valuable for its users by increasing the accessibility of professional support and creating opportunities for more self-direction in support

Subcellular heterogeneity of ryanodine receptor properties in ventricular myocytes with low T-tubule density

Rationale: In ventricular myocytes of large mammals, not all ryanodine receptor (RyR) clusters are associated with T-tubules (TTs); this fraction increases with cellular remodeling after myocardial infarction (MI). Objective: To characterize RyR functional properties in relation to TT proximity, at baseline and after MI. Methods: Myocytes were isolated from left ventricle of healthy pigs (CTRL) or from the area adjacent to a myocardial infarction (MI). Ca2+ transients were measured under whole-cell voltage clamp during confocal linescan imaging (fluo-3) and segmented according to proximity of TTs (sites of early Ca2+ release, F>F50 within 20 ms) or their absence (delayed areas). Spontaneous Ca2+ release events during diastole, Ca2+ sparks, reflecting RyR activity and properties, were subsequently assigned to either category. Results: In CTRL, spark frequency was higher in proximity of TTs, but spark duration was significantly shorter. Block of Na+/Ca2+ exchanger (NCX) prolonged spark duration selectively near TTs, while block of Ca2+ influx via Ca2+ channels did not affect sparks properties. In MI, total spark mass was increased in line with higher SR Ca2+ content. Extremely long sparks (>47.6 ms) occurred more frequently. The fraction of near-TT sparks was reduced; frequency increased mainly in delayed sites. Increased duration was seen in near-TT sparks only; Ca2+ removal by NCX at the membrane was significantly lower in MI. Conclusion: TT proximity modulates RyR cluster properties resulting in intracellular heterogeneity of diastolic spark activity. Remodeling in the area adjacent to MI differentially affects these RyR subpopulations. Reduction of the number of sparks near TTs and reduced local NCX removal limit cellular Ca2+ loss and raise SR Ca2+ content, but may promote Ca2+ waves

The effect of regular walks on various health aspects in older people with dementia: protocol of a randomized-controlled trial

<p>Abstract</p> <p>Background</p> <p>Physical activity has proven to be beneficial for physical functioning, cognition, depression, anxiety, rest-activity rhythm, quality of life (QoL), activities of daily living (ADL) and pain in older people. The aim of this study is to investigate the effect of walking regularly on physical functioning, the progressive cognitive decline, level of depression, anxiety, rest-activity rhythm, QoL, ADL and pain in older people with dementia.</p> <p>Methods/design</p> <p>This study is a longitudinal randomized controlled, single blind study. Ambulatory older people with dementia, who are regular visitors of daily care or living in a home for the elderly or nursing home in the Netherlands, will be randomly allocated to the experimental or control condition. Participants of the experimental group make supervised walks of 30 minutes a day, 5 days a week, as part of their daily nursing care. Participants of the control group will come together three times a week for tea or other sedentary activities to control for possible positive effects of social interaction. All dependent variables will be assessed at baseline and after 6 weeks, and 3, 6, 9, 12 and 18 months of intervention.</p> <p>The dependent variables include neuropsychological tests to assess cognition, physical tests to determine physical functioning, questionnaires to assess ADL, QoL, level of depression and anxiety, actigraphy to assess rest-activity rhythm and pain scales to determine pain levels. Potential moderating variables at baseline are: socio-demographic characteristics, body mass index, subtype of dementia, apolipoprotein E (ApoE) genotype, medication use and comorbidities.</p> <p>Discussion</p> <p>This study evaluates the effect of regular walking as a treatment for older people with dementia. The strength of this study is that 1) it has a longitudinal design with multiple repeated measurements, 2) we assess many different health aspects, 3) the intervention is not performed by research staff, but by nursing staff which enables it to become a routine in usual care. Possible limitations of the study are that 1) only active minded institutions are willing to participate creating a selection bias, 2) the drop-out rate will be high in this population, 3) not all participants will be able to perform/understand all tests.</p> <p>Trial registration</p> <p><a href="http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1482">NTR1482</a></p

Peri-operative red blood cell transfusion in neonates and infants: NEonate and Children audiT of Anaesthesia pRactice IN Europe: A prospective European multicentre observational study

BACKGROUND: Little is known about current clinical practice concerning peri-operative red blood cell transfusion in neonates and small infants. Guidelines suggest transfusions based on haemoglobin thresholds ranging from 8.5 to 12 g dl-1, distinguishing between children from birth to day 7 (week 1), from day 8 to day 14 (week 2) or from day 15 (≥week 3) onwards. OBJECTIVE: To observe peri-operative red blood cell transfusion practice according to guidelines in relation to patient outcome. DESIGN: A multicentre observational study. SETTING: The NEonate-Children sTudy of Anaesthesia pRactice IN Europe (NECTARINE) trial recruited patients up to 60 weeks' postmenstrual age undergoing anaesthesia for surgical or diagnostic procedures from 165 centres in 31 European countries between March 2016 and January 2017. PATIENTS: The data included 5609 patients undergoing 6542 procedures. Inclusion criteria was a peri-operative red blood cell transfusion. MAIN OUTCOME MEASURES: The primary endpoint was the haemoglobin level triggering a transfusion for neonates in week 1, week 2 and week 3. Secondary endpoints were transfusion volumes, 'delta haemoglobin' (preprocedure - transfusion-triggering) and 30-day and 90-day morbidity and mortality. RESULTS: Peri-operative red blood cell transfusions were recorded during 447 procedures (6.9%). The median haemoglobin levels triggering a transfusion were 9.6 [IQR 8.7 to 10.9] g dl-1 for neonates in week 1, 9.6 [7.7 to 10.4] g dl-1 in week 2 and 8.0 [7.3 to 9.0] g dl-1 in week 3. The median transfusion volume was 17.1 [11.1 to 26.4] ml kg-1 with a median delta haemoglobin of 1.8 [0.0 to 3.6] g dl-1. Thirty-day morbidity was 47.8% with an overall mortality of 11.3%. CONCLUSIONS: Results indicate lower transfusion-triggering haemoglobin thresholds in clinical practice than suggested by current guidelines. The high morbidity and mortality of this NECTARINE sub-cohort calls for investigative action and evidence-based guidelines addressing peri-operative red blood cell transfusions strategies. TRIAL REGISTRATION: ClinicalTrials.gov, identifier: NCT02350348

Supporting independently living people with intellectual disabilities : a qualitative study into professional remote support practices

Background Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefore important. The purpose of this study was to gain insight into the remote support practice of the support staff of the Dutch service DigiContact. Methods A qualitative study was performed in which we followed an inductive-iterative process and used different sources of information: documents, interviews with people who are supported by DigiContact and their caseworkers, and interviews with DigiContact support workers. Findings Seven themes were constructed and described. Four themes reflected the support activities of DigiContact support workers, and three themes reflected qualities that guide how the support is provided. Conclusions A remote support context can bring both challenges and opportunities to the practice of supporting people with intellectual disabilities. The findings can be useful for service organisations who are contemplating the adoption of remote support initiatives for people with intellectual disabilities

'It really is quite a different ballgame'. A qualitative study into the work experiences of remote support professionals

Background Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method Semi-structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution-oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations

The effects of observation of walking in a living room environment, on physical, cognitive, and quality of life related outcomes in older adults with dementia: A study protocol of a randomized controlled trial

textabstractBackground: The number of older adults with dementia is expected to increase. Dementia is not only characterized by a decline in cognition, also other functions, for example, physical functioning change. A possible means to decrease the decline in these functions, or even improve them, could be increasing the amount of physical activity. A feasible way hereto may be activation of the mirror neuron system through action observation. This method has already been shown beneficial for the performance of actions in, for example, stroke patients. The primary aim of this study is to examine the effect of observing videos of walking people on physical activity and physical performance, in older adults with dementia. Secondary, effects on cognition and quality of life related factors will be examined. Methods/Design: A cluster randomized controlled trial is being performed, in which videos are shown to older adults with dementia (also additional eligibility criteria apply) in shared living rooms of residential care facilities. Due to the study design, living rooms instead of individual participants are randomly assigned to the experimental (videos of walking people) or control (videos of nature) condition, by means of drawing pieces of paper. The intervention has a duration of three months, and takes place on weekdays, during the day. There are four measurement occasions, in which physical activity, physical functioning, activities of daily living, cognition, the rest-activity rhythm, quality of life, and depression are assessed. Tests for participants are administered by a test administrator who is blind to the group the participant is in. Discussion: This study examines the effect of the observation of walking people on multiple daily life functions and quality of life related factors in older adults with dementia. A strength of this study is that the intervention does not require much time and attention from caregivers or researchers. A challenge of the study is therefore to get to know for how long residents watch the videos. However, the design implies a high feasibility of the study, as well as a high applicability of the intervention into daily care. Trial registration: NTR4708. Date of registration: 31 July 2014

Providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic:Experiences of direct support workers

Background:  Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic.  Method:  Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically.  Results:  Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first.  Conclusion:  This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic