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Direct linkSiméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – Intellectual and Developmental Disabilities, 2024
Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Quality of Life, Children
Diane Fox; Julie Beadle-Brown; Jill Bradshaw; Christine Bigby; Lisa Richardson – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. Method: Participant observations and…
Descriptors: Intellectual Disability, Group Homes, Developmental Disabilities, Organizational Culture
Beadle-Brown, Julie; Beecham, Jennifer; Leigh, Jennifer; Whelton, Rebecca; Richardson, Lisa – Journal of Applied Research in Intellectual Disabilities, 2021
Background: With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. Methods: In order to explore the outcomes and costs of skilled support for this group of people, quality of…
Descriptors: Severe Intellectual Disability, Social Services, Program Effectiveness, Costs
Zalmstra, Trees A. L.; Reinders-Messelink, Heleen A.; Elema, Agnes; Van Gils, Willemijn; Van Der Sluis, Corry K.; Van Der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the…
Descriptors: Test Validity, Test Reliability, Quality of Life, Adults
Torsten Hammann; Jakob Valic; Gašper Slapnicar; Mitja Luštrek – International Journal of Developmental Disabilities, 2024
Introduction: The preferences of people with profound intellectual and multiple disabilities (PIMD) often remain unfulfilled since it stays challenging to decode their idiosyncratic behavior resulting in a negative impact on their quality of life (QoL). Physiological data (i.e. heart rate (variability) and motion data) might be the missing piece…
Descriptors: Psychological Patterns, Intellectual Disability, Comorbidity, Severe Intellectual Disability
Download full textVan der Mescht, Pauli; Geertsema, Salome; le Roux, Mia; Graham, Marien A.; Johnson, Ensa – South African Journal of Childhood Education, 2023
Background: Physical, financial, social and emotional demands placed on caregivers caring for their children with severe intellectual disabilities (CWSID) could lead to high levels of burden. Aim: This study aimed to evaluate the potential level of burden experienced by South African caregivers and aimed to identify possible contributing risk…
Descriptors: Foreign Countries, Child Rearing, Severe Intellectual Disability, Caregiver Role
Kruithof, Kasper; Olsman, Erik; Nieuwenhuijse, Appolonia; Willems, Dick – Journal of Intellectual & Developmental Disability, 2022
Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Parent Attitudes, Children
Nieuwenhuijse, Appolonia M.; Willems, Dick L.; van Goudoever, Johannes B.; Echteld, Michael A.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2019
Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the…
Descriptors: Quality of Life, Severe Intellectual Disability, Multiple Disabilities, Evaluation Methods
Nieuwenhuijse, A. M.; Willems, D. L.; van Goudoever, J. B.; Olsman, E. – International Journal of Developmental Disabilities, 2022
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…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Caregiver Attitudes, Caregivers
Talman, Lena; Wilder, Jenny; Stier, Jonas; Gustafsson, Christine – Journal of Applied Research in Intellectual Disabilities, 2019
Background: Participation is a central aspect of quality of life, and it is indicative of high-quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities. Aim: To describe staff members' perceptions of what participation means for adults…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Adults, Participation
de Geus-Neelen, Karin C. J. M.; van Oorsouw, Wietske M. W. J.; Hendriks, Lex A. H. C.; Embregts, Petri J. C. M. – Journal of Intellectual & Developmental Disability, 2019
Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other. Method: Fifty-one…
Descriptors: Severe Intellectual Disability, Quality of Life, Decision Making, Empowerment
Nieuwenhuijse, Appolonia M.; Willems, Dick L.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2020
Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD,…
Descriptors: Physicians, Attitudes, Quality of Life, Severe Intellectual Disability
Gauthier-Boudreault, Camille; Beaudoin, Audrée Jeanne; Gallagher, Frances; Couture, Mélanie – Journal of Intellectual & Developmental Disability, 2019
Background: After 21 years of age, adults with a profound intellectual disability (PID) have limited access to specialised services. An important concern that emerges is the potential decrease in their social participation. Knowing the benefits of social participation for adults with PID, it is relevant to address this issue. Method: This scoping…
Descriptors: Severe Intellectual Disability, Young Adults, Leisure Time, Interpersonal Relationship
Beadle-Brown, J.; Leigh, J.; Whelton, B.; Richardson, L.; Beecham, J.; Baumker, T.; Bradshaw, J. – Journal of Applied Research in Intellectual Disabilities, 2016
Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…
Descriptors: Quality of Life, Severe Intellectual Disability, Social Support Groups, Predictor Variables
Rodrigues, Stephania A.; Fontanella, Bruno J. B.; Avó, Lucimar R. S.; Germano, Carla M. R.; Melo, Débora G. – Journal of Applied Research in Intellectual Disabilities, 2019
Background: This study investigated the psychocultural perspectives concerning family quality of life among Brazilian families with children who have severe or profound intellectual disability. Methods: Individual in-depth semi-structured interviews conducted with 15 mothers, selected by convenience, were analysed using a categorical thematic…
Descriptors: Foreign Countries, Quality of Life, Severe Intellectual Disability, Family Environment
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