Life History: The Impact of a Changing Service Provision on an Individual with Learning Disabilities

Terlizzi, Michele Di

doi:10.1080/09687599466780481

Cited by 9 publications

(4 citation statements)

References 9 publications

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“…Of the 13 included QoL studies, eight were quantitative,29–36 two were qualitative,37 38 two were mixed methods studies39 40 and one was a case study 41…”

Section: Resultsmentioning

confidence: 99%

“…The impact of the move on the individuals’ social integration and family contact as it related to their QoL was a common theme in all five studies. The case study presents the life history of a woman with learning disabilities and severe challenging behaviour who after 30 years in UK institutions, experienced increases in QoL following her eventual move to a small community staffed house 41. In particular, access to individualised day programmes increased perceived positive social integration.…”

Section: Qualitative Studiesmentioning

confidence: 99%

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Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review

et al. 2019

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ObjectiveTo review systematically the evidence on how deinstitutionalisation affects quality of life (QoL) for adults with intellectual disabilities.DesignSystematic review.PopulationAdults (aged 18 years and over) with intellectual disabilities.InterventionsA move from residential to community setting.Primary and secondary outcome measuresStudies were eligible if evaluating effect on QoL or life quality, as defined by study authors.SearchWe searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches. We assessed study quality using the Critical Appraisal Skills Programme suite of tools, excluding those judged to be of poor methodological quality.ResultsThirteen studies were included; eight quantitative studies, two qualitative, two mixed methods studies and one case study. There was substantial agreement across quantitative and qualitative studies that a move to community living was associated with improved QoL. QoL for people with any level of intellectual disabilities who move from any type of institutional setting to any type of community setting was increased at up to 1 year postmove (standardised mean difference [SMD] 2.03; 95% CI [1.21 to 2.85], five studies, 246 participants) and beyond 1 year postmove (SMD 2.34. 95% CI [0.49 to 4.20], three studies, 160 participants), with total QoL change scores higher at 24 months comparative to 12 months, regardless of QoL measure used.ConclusionOur systematic review demonstrated a consistent pattern that moving to the community was associated with improved QoL compared with the institution. It is recommended that gaps in the evidence base, for example, with regard to growing populations of older people with intellectual disability and complex needs are addressed.PROSPERO registration numberCRD42018077406.

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“…Of the 13 included QoL studies, eight were quantitative,29–36 two were qualitative,37 38 two were mixed methods studies39 40 and one was a case study 41…”

Section: Resultsmentioning

confidence: 99%

Section: Qualitative Studiesmentioning

confidence: 99%

Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review

et al. 2019

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“…Biographical/life history data collection methods have also involved researcher/familiar person observation within the individual's previous home or workplace (Goodwin, 2019). Other previous research has involved researchers extracting data from archived notes and observations recorded by clinicians and healthcare providers, which demonstrated the experience of a child with severe motor and communication impairment within an institution (Terlizzi, 1994). The child's positive behavioral progressions and relocated living areas within the institution were of focus, aspects of her life unattached to the institution were glossed over (i.e., personality characteristics and parental/sibling reflections from off-site day visits).…”

Section: Discussionmentioning

confidence: 99%

The “Recreated Experiences” Approach: Exploring the Experiences of Persons Previously Excluded in Research

Noyek

Davies

Batorowicz

et al. 2022

International Journal of Qualitative Methods

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Individuals with profound motor, communication, and/or cognitive impairments may face difficulties describing subjective or experiential information through (i) speech, (ii) writing using a pencil and paper, and (iii) typing using a standard computer keyboard. Although patient-reported outcome measures and patient-reported experience measures can capture information about this group through proxy-report, we cannot solely rely on the responses of a single proxy for experiential information. Research methods to understand the experiences of individuals with profound motor, communication and cognitive impairments are not well defined in the literature. Purpose: To provide guidance to disability researchers on how to explore the subjective and personal experiences, of individuals with profound, motor, communication, and/or cognitive impairments. Three axes are proposed as important to the structure of the “recreated experiences” method: (i) informants, (ii) data collection methods, and (iii) analyses and reflexivity. Different types of information can be gained by involving different informant groups in research about the central person’s experience. Primary guardians can provide information about interpreting central persons’ indicators of expression and broad assessments of their personal life. Other adults can provide insight relative to the central person’s capacities outside of the primary guardian-central person dyad. Peers can provide insight about personal characteristics (i.e., personality traits). Utilizing different data collection methods can foster manifest and latent content to emerge. Analyses and reflexivity which involve diverse perspectives are essential to ensure findings are grounded in lived experience and professional lenses. The method highlights the importance of furthering research to understand the experiences of individuals who cannot traditionally self-express, which may influence possibilities for enhancing care, participation opportunities, and overall well-being.

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“…Properly told stories about the lives of people with learning disabilities will often illustrate, even over a relatively short period of time, the contingency of T A has acquired this label, it becomes impossible to shift. In the past people got stuck in long stay institutions even when there was considerable evidence of variation in their behaviour over time, reflecting, essentially, the way in which they were treated (e.g., Di Terlizzi, 1994). Even now, once in the system of residential schools, assessment and treatment units, out of area placements and so on, it becomes extremely difficult to break free of the label.…”

Section: Peter Mcgill Tizard Centrementioning

confidence: 99%

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McGill

2015

Tizard Learning Disability Review

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Life History: The Impact of a Changing Service Provision on an Individual with Learning Disabilities

Cited by 9 publications

References 9 publications

Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review

Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review

The “Recreated Experiences” Approach: Exploring the Experiences of Persons Previously Excluded in Research

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