A qualitative study of the needs of older adults with intellectual disabilities

McCausland, D; Guérin, Suzanne; Tyrrell, Janette; Donohoe, Clare; O’Donoghue, Isabelle; Dodd, Philip

doi:10.1111/jar.12900

Cited by 13 publications

(9 citation statements)

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“…A substantial body of evidence shows that these transitions frequently occur in unplanned and/or crisis circumstances. This evidence relates to people with intellectual disabilities living in the family home (Grey et al, 2020 : McCausland et al, 2021 ; Nankervis et al, 2011 ; Ryan et al, 2014 ; Taggart et al, 2012 ) and in community residential accommodation, with people with intellectual disabilities and behaviours that challenge others at particular risk of community placement breakdown (Bigby et al, 2011 ; Broadhurst & Mansell, 2007 ; Philips & Rose, 2010 ). In the UK, two‐thirds of adults with intellectual disabilities live with their families, typically parents (NICE, 2018b ).…”

Section: Introductionmentioning

confidence: 99%

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Tilley

Jordan

Larkin

et al. 2022

Research Intellect Disabil

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Background: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK.Method: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis.Results: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis.Conclusions: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others. K E Y W O R D S ageing, behaviours that challenge others, intellectual disabilities, older people, transitions 1 | INTRODUCTION 1.1 | Background and rationale Over 1 million adults with intellectual disabilities live in the United Kingdom (UK), representing over 2% of the total adult population (Mencap, 2021). In line with an overall UK ageing population (Office of National Statistics (ONS), 2021) people with intellectual disabilities are living longer. In England, an estimated 53% of the total population of people with intellectual disabilities were aged 45+ in 2020 (with almost 5% aged 85+), predicted to rise to 56% by 2040 (and 7.5% aged 85+) (Institute of Public Care (IPC), 2020).Increased longevity is heavily implicated in the predicted rise of 30% in people with intellectual disabilities aged 50+ requiring social care services in England over the period -2030(Emerson et al., 2012. In Wales, in 2020/21, 9% of all people with intellectual disabilities registered (1231 people) were aged 65+, an increase of 54% from 2001/02, with 18% of people aged 65+ (222 people) living with their parents or other family members (StatsWales, 2022).Data from the 2011 census showed that 37% of people with intellectual disabilities in Scotland were aged 45+ (9619 people), with 3% aged 75+ (Scottish Learning Disabilities Observatory, n.d.). The 2011 census also reported that 24% of people in Northern Ireland with intellectual disabilities were aged 45+ (9049 people), with 8%

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Section: Introductionmentioning

confidence: 99%

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Tilley

Jordan

Larkin

et al. 2022

Research Intellect Disabil

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“… 12 35 36 It is globally accepted that in a person-centred support system, there should be an alignment between the wishes and goals of a person, his or her support needs, the support given and his or her QOL outcome, 36 yet not all PID are able to explicitly communicate their goals. 13 35 Too often PID are dependent on DSPs’ abilities to communicate at their level and understand them. Therefore, DSPs need to depend on their own experience and those of others (family or other proxies) to understand what is meaningful for the PID in order to tailor and adapt activities to each individual with ID.…”

Section: Introductionmentioning

confidence: 99%

“…Most PID lack age-specific support and when they age this can potentially lead to inappropriate placement and loss of social networks 11. Older PID are a profoundly diverse group with different and complex needs,12 13 which requires specific assessment and person-centred planning and support 12. Although specific risk factors such as different life course trajectories, older prejudices, networks falling apart and age-related health problems exist, older PID can be supported in an active way, with specific interventions adapted to their individual needs 11…”

Section: Introductionmentioning

confidence: 99%

“…In recent years the personal goals, needs and wishes of PID became increasingly important in enabling MA 12 35 36. It is globally accepted that in a person-centred support system, there should be an alignment between the wishes and goals of a person, his or her support needs, the support given and his or her QOL outcome,36 yet not all PID are able to explicitly communicate their goals 13 35. Too often PID are dependent on DSPs’ abilities to communicate at their level and understand them.…”

Section: Introductionmentioning

confidence: 99%

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Supporting direct support professionals in enabling people with intellectual disabilities to engage in meaningful activities: protocol for the Meaningful Activities 4 All (MA4A) study based on the human-centred design process

et al. 2022

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IntroductionMeaningful activities (MA) have a positive impact on identity, well-being, participation and inclusion. Although people with intellectual disabilities (PID) depend on their direct support professionals (DSPs) to engage in MA, the DSPs need support which could enable them to offer more qualitative care and support.Methods and analysisTo identify DSPs’ needs, and to develop a tool/service, an innovative and iterative approach is developed, based on the human-centred design (HCD) process, combined with traditional qualitative and quantitative research methods. In the inspiration phase (needs analysis), in-depth interviews will be conducted in two day care centres in Flanders using an interpretative phenomenological analyses, one with a supply-driven approach and the other with a demand-driven approach, followed by a survey sent to all Flemish day care centres. In the ideation phase, the insights of phase 1 will guide a cocreation process (comprising a World Cafe, brainstorm and prototype sessions) with the DSPs, PID and other stakeholders. In the implementation phase, the solution will be tested in the two day care centres from phase 1 by means of living labs and a realist evaluation. By adopting this protocol, the functionality, quality, usability and acceptance are expected to increase. This protocol adopts all phases of the HCD process and shows the complementarity of HCD with traditional research methods. PID and the DSPs will benefit as the end result is truly grounded in their specific needs and wishes.Ethics and disseminationEthical approval by the Ethics Committee of the University Hospital Ghent, Belgium (reference numbers: B670202042983 and PA2021-091). All participants will sign informed consent forms. Results of this study will be submitted for publication in relevant peer-reviewed journals and will be presented at relevant conferences.

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“…Needs support in the education for a child with special education needs is inclusive of paternal acceptance of the child, maternal role in encouraging positive behaviors, and the mental health of the whole family [14]- [16]. A review of the handling of behavior problems of CSEN in the classroom is thus necessary and highly recommendable.…”

Section: Introductionmentioning

confidence: 99%

Handling behavior problems of children with special educational needs based on teacher analysis

Suparno

Hermanto²,

Sukinah³

et al. 2022

EduLearn

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Handling of behavior problems in children with special educational needs(CSEN) in the classroom is urgent for the classroom’s conduciveatmosphere. Therefore, a review needs to be conducted to determine whatsteps the teacher may take for coping purposes in handling the behaviorproblems of CSEN, to determine the predictors for handling the behaviorproblems of CSEN, to identify the analysis basis for determining teacherpredictors, and to figure out the effects of the behavior of CSEN based onthe predictors chosen by the teacher. A survey was conducted on 109teachers of CSEN. This research used a Google Forms questionnairecontaining a list of statements to be chosen by teachers as instrument, andanalysis was carried out by computing the frequencies at which the teacherschose the statements in percentage and by comparing teachers’ statements onthe way they handled behaviors. The results show that the teachers weremore inclined toward problem-focused coping (PFC), the predictor chosenwas intimacy control, the teacher directed the children to do a task at thetime a behaviour problem arose, and in choosing predictors, the teacherswould rather calm the children down and give them comfort, making thechildren calmed.

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A qualitative study of the needs of older adults with intellectual disabilities

Cited by 13 publications

References 40 publications

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Supporting direct support professionals in enabling people with intellectual disabilities to engage in meaningful activities: protocol for the Meaningful Activities 4 All (MA4A) study based on the human-centred design process

Handling behavior problems of children with special educational needs based on teacher analysis

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